Tripp's Story

Tripp was born on May 14, 2009.  I had a perfect pregnancy and a perfect delivery.  No problems at all.  We did not find out the sex of our baby before hand, so we were all waiting for the surprise.  Well, we sure got a surprise when our 7lb. 9oz. beautiful baby boy was born.  He came out with a huge blister covering his head and his fingernails were very long and a little deformed.  But to me, there was nothing wrong.  He was just beautiful... just perfect.  See?






Shortly after I delivered... before they came back to give me my baby.  The pediatrician on call came in and told me that they were about 99% sure that our baby had a skin disease called "Epidermolysis Bullosa."  Wow.  Okay... we had NO CLUE what it was or in his case, how severe it was.   I started to cry.  Not even knowing what it would entail.  The doctors couldn't really tell me that much information about it and my family certainly didn't let me look online to read about it because the internet can be a very scary thing, especially since we didn't have a clue what type he had.   We stayed in the hospital for about 2 weeks... transferring to the pediatric room after I was healed (which didn't take long, thank God).  Leaving the hospital, we still did not know much about the disease.  Only that any type of friction would cause his skin to blister and that he needed very soft blankets and soft clothing and cloth diapers, etc... He had the blister on his head, his fingernails were deformed, he started getting little blisters from his hospital bracelet and he started getting HUGE blisters on his bottom from regular diapers.  We didn't even know at this time that we needed to pop the blisters because if we didn't, they would grow fast... and take a VERY long time to heal, if they ever healed.  They took one biopsy before we left the hospital.  

When we took him home, it was time to research.  I found out that instead of leaving him naked and trying to air out all of his sores, that I was supposed to be wrapping him up to prevent the blisters. The pictures online made me sad... and I could not look at them.  It was family that did most of the research and they would tell me what they found, because I just couldn't look.  We then found the charitable organization Debra.  I do not have enough space to tell you HOW AMAZING they were to us.  We contacted the EB nurse, Geri Kelly who is affiliated with Debra, and immediately they sent us out boxes and boxes of stuff.... diapers, bandaging supplies, blankets, bath sponges, you name it.  And about a month after we were home, Geri made a special visit to our house.  She brought with her more supplies and a lot of information.  Not information we wanted to hear, but that we needed to hear.  From day one, I tried to be so positive.... But it just felt as if I kept getting let down.  He was gradually getting worse by each month.

Of course, the first biopsy that they took in the hospital did not tell anything.  So we brought him to the dermatologist at about 2 months to do the next one.  He took a pencil eraser and rubbed hard on his thigh and the blister popped right up.  That's how he did the biopsy.  He told us then that he thought it was the less severe type by how the blister popped up so fast... little did EVERYONE know that the biopsy came back (months later) as Junctional EB.  "Junctional"  UGH.  I didn't expect that one.  Junctional EB kids are not expected to live past two years old.  Well there are two types of Junctional (one being more severe than the other) but Tripp's biopsy couldn't distinguish between the two.  So that's as far as we went.  What did it matter anyway?  There had been lethal cases in both types.  

We made our first trip to see an EB specialist in Denver, CO.  He didn't tell us anything that we didn't know already from our research online.  He recommended that we go see a team of specialists in Cincinnati.  So we made that trip about 3 weeks later.  The dermatologist in Cincinnati told us just by looking at him that he wouldn't live to be a year old.  We were devastated.  And from that moment on, I told myself that I would dedicate every single solitary second of my life to Tripp.  I would do my best to get him the very best doctors, the very best care, and love love and more love.  I would make every second that he is here with me special.  

The breathing problems started early on... about 3 months, or before.  At that time, we really weren't even thinking "trach."  That was just not going to happen.  We saw a pulmonary doctor (the best around... great, great, great doctor- Dr. Fernando Urrego) and we started nebulizers to help him breathe easier.  We did not yet know the cause of the breathing problems.  Then the eating problems started.  I could not get him to suck a bottle.  He started getting the sores in his mouth, he started getting teeth very early, and he was in pain. And he had NO interest in eating at all.  I got to the point where I had tried everything... a syringe, a spoon, breastfeeding, every type of bottle and every type of nipple.  He wouldn't have it.  And the one thing that is stressed the MOST about EB is nutrition.  They need calories to heal and calories to grow.  And they are losing so much fluid from all the sores that it needs to be replaced. We were in and out of the hospital already for breathing difficulties and because he would go days without eating at all. So we knew we didn't have a choice.  It was time for the G-tube.  It was terrifying.  Sending your "fragile skin" baby with complete strangers and trusting in them to take care of him as you do is pretty much the hardest thing I've ever had to do.  But when I saw the end result, I was forever grateful.  They took great care of him... his skin looked great and he had his brand new tube.  Now we could get the calories in. 


After that, we probably spent the next few months in the hospital.  We had (and still have) the best doctors in the entire world.  His pediatrician is Dr. Lisa Defusco and his ENT is Dr. Kimsey Rodriguez.  Without these two, I don't think Tripp would be alive today. His breathing got so bad that I didn't know how much longer he could go on.  When they did the first bronchoscope, they found that he had tracheomalacia (pretty much a floppy airway).  They made a few snips on the tissue to open up the airway, and it made him breathe better for a little while, but it didn't last long.  The second time that they did the bronchoscope, the ENT said that there was nothing else she could do... his airway was too swollen and he would need a tracheostomy.  Again, we had no choice.  Which sadly, was probably for the best at the time. 


Now, we are finally getting used to dealing with his skin issues (we bathe and rebandage his entire body every other day), his G-tube, and his trach.  Never is there a boring day.  There are always new challenges... new blisters, corneal abrasions, throwing up after feeds, mucus plugs... I could go on forever.  But we have learned with time that every day we have with our little boy is a gift from God.  He was sent to us for a reason and he was put on this earth for a reason.  He is an angel... the joy of my life, what I look forward to every day.  





He eventually went through several eye surgeries due to continuous corneal abrasions and tissue growth over his eyeballs.  But it got to the point where the surgeries were just causing more harm than good.  So we backed off and I had to come to the reality that my son was going blind.  He now cannot see (maybe shadows and lights, but that's all).  The tissue has grown over his eyelids and his eyelids now fused shut. But the only positive is that they do not cause him any more pain (at least I don't think:)


Tripp is on constant pain medicine, but on most occasions (when he is not down from an infection or acutely sick), he is a very playful, happy boy who LOVES to play the drums.  
He is VERY smart and despite not being able to speak/see, he has definitely been given a gift of hearing and an ear for music.  He can play his drums perfectly to the rhythm of any tune:)
I am one PROUD Momma.



Tripp and I moved in with my parents in Ponchatoula, LA when he was about a year old.  His father, Randy, and I are divorced and he was not involved in Tripp's care.   
Tripp's condition continued to worsen with time.  The infections were covering his body, and he was too sick to play or even muster a smile.  His precious body began to get tired.  


On January 14, 2012, Tripp received his wings and went to be with Jesus.  
My baby took his last breath, in the rocking chair, in my arms. 

Our hearts are broken. 
I truly appreciate your prayers and support through this unbearable time. 



Love,

474 comments:

  1. What an amazing story. You have a gift to write, Courtney. You have touched me by your words. I pray for your family often. Don't give up!

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  2. Hi Courtney (Randy & Tripp too!!)
    I know you have your hands VERY full, but I thought I would just throw this out there to you. There is a young Mom, Named Anim, who gave birth to William 8 weeks ago and William has EB. She is currently living in Texas so they can be close to the hospital.
    I've been doing what I can to help out and I do believe, Geri form DEBRA has finally been in contact with her. I just spoke with Anim yesterday and I just know she would so appreciate hearing from someone who has been in her shoes. If you would be interested in talking to her, I would LOVE to send you her contact info. Happy Birthday to Tripp!! I hope he continues to do well and be Happy! think about you all the time and what an amazing family you are. I look forward to hearing from you if you're interested..take care!!
    Laurie Sterner
    thebutterflyfund.org

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  3. Hi Courtney (Randy & Tripp too!!)
    I know you have your hands VERY full, but I thought I would just throw this out there to you. There is a young Mom, Named Anim, who gave birth to William 8 weeks ago and William has EB. She is currently living in Texas so they can be close to the hospital.
    I've been doing what I can to help out and I do believe, Geri form DEBRA has finally been in contact with her. I just spoke with Anim yesterday and I just know she would so appreciate hearing from someone who has been in her shoes. If you would be interested in talking to her, I would LOVE to send you her contact info. Happy Birthday to Tripp!! I hope he continues to do well and be Happy! think about you all the time and what an amazing family you are. I look forward to hearing from you if you're interested..take care!!
    Laurie Sterner
    thebutterflyfund.org

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  4. oh my he is just so adorable.

    Keep on fighting little one xxx

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  5. My 7 year old son has a seizure disorder. Nothing else. I am very selfish sometimes and get angry and bitter and cry "Why him/us/this?!". I have been following your blog for a while (from Jonah's).

    When I read about Tripp and Jonah it makes me realize how fortunate we are. I am amazed at your strength in dealing with it and the love that radiates in your words for your son.

    I hope I can remember more often to be thankful for what we're given. You have set a true Christian example of seeing the beauty no matter the circumstance. And I believe there is always beauty to be found; if only we are open to seeing it.

    Thanks for sharing Tripp with all of us:)
    Julie B.

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  6. You are an amazing mother, an inspiration to any mom out there who thinks they just can't do it. My daily struggles with my 2 kids make me appreciate life even more. You and your family are in my prayers.

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  7. My heart goes out to you & your family. I am following your story now. Good luck & I will keep you in my prayers.

    Nicole
    www.onelittlemister.com

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  8. You and your family will get an amazing reward in heaven! I will pray for you and will follow your story!

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  9. I send you strength and courage - you have them, but with EB they are always needed. My best wishes for Tripp!

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  10. I read your story from a post of Ava's on her facbook. Your family and your son should be such an inspiration to everyone out there. He is such a precious baby boy, and I will be praying for him and you and your family.
    You were right when you said God put him in ya'll hands for a reason, ya'll are the most loving, dedicated parents to such a sweet little blessing from God!!

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  11. Hi Courtney, your little boy is so amazing and so is your story. Looking at the pictures and knowing there is currently no cure, I am realizing that most EB babies are born with good (sorry if its not the right word) skin that gets blistered over time so that makes me think whether there is a research going on into a possibility of a cure coming from mother's body, whether it's a nutrition of the baby before he's born or amniocetic fluid and whether this is something the researchers could look into if what a body of a pregnant woman makes could heal or ease the EB effects...
    Im sending you and especially your sweet peanut lots of virtual hugs and prayers
    Love
    Molly

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  12. Hi Courtney. I want you to know you, Tripp and Randy are all in my prayers - and all the intercessors at my little church will be praying as well. Never forget Jesus is right there with all of you...every minute of every day. Tripp is so precious. He has the most beautiful smile. :) I am believing God for a miracle for him.
    Much love -

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  13. You and your family are so amazing . I read every day. My nephew is Daylon Edling who is doing well after his BMT ! I really pray for baby Tripp to be well ! He is such a cute little Angel. Keep your faith Courtney!

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  14. Wow, that's all can say. I have three little boys and I can't even imagaine what you go through everyday. I was reading the other day and my oldest (3 1/2 years) saw me crying and asked what was wrong. I showed him pictures of Tripp and asked him to pray for him so he did, then my almost two year old said he wanted to pray. Ya'll have been in my prayers for a while, I'm glad that you have this page because it reminds me to pray and let's me know how. I pray that God would give you and your family supernatural strength, that you would treasure every moment, and for Tripp that he would not be in pain. He really is a beautiful boy. God bless you Courtney!

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  15. Courtney, I had no idea all about all you have been going through.. My thoughts and prayers are with you, Tripp and Randy. What a beautiful family you have. I happened to see a prayer request on someones facebook and wanted to find out a little about Tripp. He is such an amazing little angel... and the love you have for him, unconditional, show in your eyes and on your face. You are right, God has BIG plans for Tripp, you and Randy. I will continue to lift you and your family up in prayer and blessings will flow down. Keep you head held high, you are a WONDERFUL MOTHER and God has choosen you and Randy for a special reason, only he knows, we have to put our trust in Him. Here is a poem I came across and I immediatly thought of you:

    "God, why do mothers cry so easily."

    God said, "You see son, when I made mothers they had to be special. I made their shoulders strong enough to carry the weight of the world, yet gentle enough to give comfort. I gave them an inner strength to endure childbirth and the rejection that many times come from their children.

    "I gave them a hardiness that allows them to keep going when everyone else gives up, and to take care of their families through sickness and fatigue without complaining.

    "I gave them the sensitivity to love their children under all circumstances, even when their child has hurt them very badly. This same sensitivity helps them to make a child's boo-boo feel better and helps them share a teenager's anxieties and fears.

    "I gave them a tear to shed. It's theirs exclusively to use whenever it's needed. It's their only weakness.

    It's a tear for mankind."

    Author Unknown


    I will continue to follow your journey. May God bless you and keep His loving arms around Tripp, Randy and you.
    Love you girl,
    Mrs. Pat Jones

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  16. you are living proof of a mother's love and god's gift to Tripp and your entire family.

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  17. I can't stop crying reading this- your baby is absolutely gorgeous- that smile melts my heart. You can see how lovely his soul just looking into those large soulful eyes. He is truly blessed with a mother like you- much love to you and your family.

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  18. You are the mother every woman should be!! Love and prayers to you all every day!

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  19. oh my goodness!! and what amazes me the MOST, is he looks like a very happy little guy!! that just goes to show the type of fighting spirit he has and the wonderful family he's surrounded by :) i read once somewhere that kids don't know they're suppose to be sad or down when they're sick. they will find reasons to be cheerful and positive whenever they can. I think adults can take a que from your family and your son :)

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  20. Praying for Tripp and for you guys. I believe in miracles :) Tripp is a beautiful baby and even though I don't know you guys, his story made me break down and cry. Bless his heart. The hardest thing for any mother is to see her baby in pain and I pray for you and your husband thru this.

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  21. I'd never heard of this before, and I can't even imagine how scary it is for you. Tripp is an adorable little guy and he looks like such a joy. Hugs to you and yours <3

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  22. I found your blog via a post by Jeffrey's Journey on facebook and I am so profoundly touched by your story and your little boy. We also have an almost three year-old son with a genetic disease called spinal muscular atrophy and did not know that we were both carriers of the disease while pregnant with Nicholas. We lived in blissful unawareness until we realized Nicholas was not meeting physical milestones like other babies his age at six months. We too live a life full of suctioning, careful positioning, ventilators and the like. My heart just goes out to you and I am so sorry that your precious little boy has to endure so much daily pain. He has the sweetest eyes and I am sure a heart of gold. I feel the same way you do, that our children were given to us for a reason and they are precious gifts from God. I hope you don't mind if I keep reading your blog and I will keep Tripp in my daily prayers.

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  23. I came across another story of a 4 yr old boy in Wiscoson Charlie Knuth with the rare skin disease.
    Charlie Knuth Out of Hospital Two Months After Stem Cell Transpl - WBAY-TV Green Bay-Fox Cities-
    http://www.wbay.com/Global/story.asp?
    I'm not sure if his situation is the same as baby Tripp. Just hoping and praying to somehow help, JoAnn

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  24. Heard about your story. We're praying for you guys. =) I knew a girl when I was younger with EB. Shes such a sweetheart. She has a youtube page. Here is her webpage. http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.jamiehartley.net%2F&h=ca375 Her name is Jamie Hartley. Thought knowing someone whos older with EB might bring you comfort.

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  25. Hi Courtney.
    I'm so sorry that you and Tripp and your family have to cope with this terrible condition.
    I too am a special needs mom, and I too have wondered "Why us? Why my beautiful girl?" But you know what? All the joy and love that she brings to life makes it all beyond "worth it."

    I have a question for you:
    In looking at the photos of Tripp, I noticed how his face got progressively more affected with sores.
    I found it a bit confusing, as you'd think that the face/head would be one area that would be fairly wound-free, especially since he's not eating by mouth.

    So, I guess my question is this:
    What causes the sores on his face (i.e. his cheeks, under his nose, etc.)?? Is it due to something he's done to "cause" it?
    Or is it more of a situation where you end up with a random blister, and they're just not healing over time?

    I wish all the best to you and Tripp!

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  26. I don’t even know how I ran into this, but I’m speechless. I just had a baby boy myself, and this is so inspiring. Your son is so beautiful, and your family is too. You are a strong woman, and a beautiful mother. Your son is so amazing, it's so amazing to see that beautiful smile on his face, keep your hopes up high. You love your kids unconditionally, and I've learned this now. I will pray for him, and I’m deeply sorry he has to go through this much pain. I wish you and your family the best, especially that little beautiful angel of yours. God bless him

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  27. I am blessed beyond telling by your beautiful story and precious baby Tripp! Thank you for sharing with us!

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  28. I just read your story in Tangi Lifestyles and i cried tears of heartache and tears of joy... you are an amazing woman/mother and Tripp is an amazing little boy. The strength you have touches me in ways that i can not explain. People say God only gives us things he knows we can handle well you are a prime example of that. he knew you would be the courageous mother that you are to Tripp and that my dear is why he chose you. thank you for sharing your family's story. god bless u, Tripp and your entire family.

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  29. My heart goes out to you & your family. I am following your story now. I am so impressed by your strength, your story is so inspiring.
    Thank you for sharing it with us.

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  30. Just watched your videos at the Youtube channel. It's unbelievable.... He is soooooo musical and only 2 years old! Seriously, you should do something about that! :-D Thanks for sharing.....

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  31. I saw you were following me (my blog) and didnt knew were you came from, so i came to your blog and read your story. God bless you and Tripp! I will add you to my blog list and you will be in my thoughts and prayers.

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  32. You are such an amazing mother. I too have a little boy named Ashton and he is my world. Just goes to show that as a mother, it doesn't matter what sicknesses are children may get or how they may be different then others, they are still our sweet babies and are always the joys and loves of our lives. You really touched my heart and so did your sweet little man's smile. I'll say a prayer for you and your family tonight, God bless :)

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  33. There is nothing I can say or do, except pray. God Bless you and little Tripp <3

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  34. Your story really touched me. I have two great-grand children born in 2009 also. The love that you show for Tripp is so beautiful. You and Tripp will be in my prayers daily and the little ones will put him in their bedtime prayers. God Bless you Tripp in your daily journey.

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  35. Hey Courtney i've been following your blog for a year now and it has truly touched my life and how I look at things now.. I think your 1 AMAZING MOM;o) I have a 3yr old daughter name Baleigh that reminds me everyday that we must read your blog and see how Tripp is doing...I have read and shared your story and pictures of Tripp with her. Before she lays down at night we say a prayer for you, Tripp and your family...She wanted me to tell you that she loves Tripp even though she never met him;o) Please continue to keep the FAITH and know GOD love you guys. I hope and pray as the days and weeks go by Tripp starts to feel better....

    Much love,
    Angel and Baleigh

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  36. Hello Courtney! What an amazing son you have! My friend forwarded your story and I couldn't stop reading everything you wrote and the pictures. You have such wonderful strength and blessed by such an adorable little boy. I will pray for Tripp, you, and your family. We hope Tripp feels better soon. God bless Tripp and you!

    With many prayers,
    Iris and Alonzo(son)

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  37. *tears* What a glorious testimony and a miraculous journey. My heart, my prayers and my love go out to each one of you! Thank you for sharing your beautiful gift from the LORD with all of us! May this message reach the entire world with this powerful testimony of strength, courage and most of all love! Thank You LORD for Your healing hand of mercy upon this family in Jesus Name!

    Cecile Jo

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  38. The story of your sons life is a beautiful well told one. I am so sorry that your poor little man had so much suffering in his life. And I am sorry that you have to hurt for him as I know you must. I,sadly, know the pains of losing a child but cannot even begin to understand the pain of seeing my child suffer. You are a strong, wonderful mother and God has a very special place for You as well as Tripp. My hear goes out to you and your family.

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  39. My first instinct is to say that my heart breaks for you and Tripp, but then I realize the love that you feel and the smile on his smile is such a gift. My admiration for you both is tremendous, beyond tremendous actually. The tears that are flowing down my cheeks are a combination of joy and anguish for this amazing little man. God bless you both. ~Lara

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  40. My heart and prayers go to your little one and to you, I hope with all my hope that God will bless him with a special blessing of a long and wonderful life...

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  41. Let me start with WOW, My heart goes out to y'all. That is one amazing story, you are a very strong woman, and Tripp is a determined little guy. The smile's on Tripps face are pricless, my prayers go out deeply to you and your famly ... Hang in there Courtney, god has blessed you with the strength and love that most could only ask for ... keep the faith & god bless you all

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  42. I don't know you or your family but I find myself both sobbing and smiling while reading this. I have 2 boys myself (3 & 2) and this breaks my heart. What a beautiful little guy you have and a loving & wonderful mother you are. I will NEVER forget seeing your sweet baby's photos and reading his story and I will continue to pray for his comfort and peace for you and your family.

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  43. My heart goes out to you as I read this. I saw a prayer request on babycenter, and I came to read your blog. I am so sorry for your struggles. I had never heard of this disease before, and I am sobbing as I look at all your pictures. Your son is amazing, and you must be one strong woman. I will pray for you and your family. <3

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  44. Thank you so much for sharing this wonderful baby's story. He truly is an angel on earth. I am 61 years old, but I just learned a wealth of life lessons from reading this baby's story.

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  45. You are an extraordinary woman! You truly were blessed with an angel! You and that precious baby will be in my prayers.

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  46. He is absolutely adorable. What an angel God has entrusted you with. Stay strong, many will continue to pray for you, Tripp and your family.

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  48. My previous post had an error. I would like to start by saying I am sorry that I am just learning about Tripp. I have been looking over your blogs and find that you, your husband, and your family are amazingly strong. I hope you all stay that way. Let go and let god, he knows what he is doing.

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  49. i want to start off by saying your a very strong person you'r prob the best mom out there i have a two year old and i say its hard until i heard your story omg i look up to you i cried my eyes out over this but god has tripp in his prayers and his family yall keep yalls head up he is a cutie every extra day you get with him is a blessing keep that in mind love,brittni

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  50. Hey Courtney,
    I'm praying for you.
    I'll be following your journey.
    Lifting up little Tripp to His creator.
    Hang in there!
    Remember, this is not our forever home!
    We will one day be ushered into his glorious presence, were no tears will be shed.
    PRESS ON!!
    You are doing great.
    One day at a time with Jesus.
    hugs to you,
    laura

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  51. I am currently an AOII at Southeastern and recently heard of little Tripp's story. I wanted you to know ya'll are constantly in our thoughts and prayers. All of your sisters are here for you. You seem like a very strong woman who can get though anything. Remember that if God brings you to it, he will bring you through it. Stay strong and God bless.
    Roses,
    Anna Espey

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  52. Hi Courtney,
    We don't know eachother but I came across a "Praying for Tripp" picture today on facebook which connected me to your blog. As I read I realized there was a prayer vigil for your sweet baby boy tonight. There will definitely be prayers from Houma, LA for him tonight. Your story and your strenghth is awe inspiring. I enjoyed watching the videos of your sweet angel. It makes me sad to see your poor little boy suffering. He is such a blessing! Thanks for sharing your story with us; God Bless.
    Victoria

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  53. Hi Courtney,
    I want to say how much your story has been such a true inspiration to all moms out there. Your story has touched me in so many ways and I will continue to pray for you all. He is definitely an Angel on Earth with that beautiful smile:)

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  54. Your son is adorable! God bless you all.

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  55. i read ur story on a friends facebook yeaterday. i have never read a story like urs and iam not the type to write to people like this, but it been heavey on my mind sence i read it. i dreamed about it and got up this morning thinking about it .i think god has a pourpose for everthing he does in this world and he has a pourpose for that little angle u have there i know he has touched my heart and u must be a very spic. person ur self for god to let u be apart of his life and to be his mother that a amazing thing to be apart of .sometimes we dont undersatnd the reason god does the things he does maybe to showe us thing we cant see normally our to show someone else what there lucky for because a healty its promised it is a gift 1 of my family member are going there a real bad time to her baby was diagnosis with hlh at 11 wk old hes about 5mo now and that 1 little baby has brought are hole town together to fight for him and donate blood and bone marrow as of now no1 has been a match ,but these little angle like them are here for a reson to make us stonger keep ur stenght and ur prayers to god because hes lessoning even when u dont think he is my prayers are with u and ur family

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  57. Courtney, I recently found your story on Facebook from a friend who posted it. I have never seen a more handsome child than Tripp! He has truly touched my heart!! He is such a STRONG little boy and you and Randy are truly blessed!! I will continue to follow Tripp's story! God Bless you!!

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  58. Wow! What a amazing little guy and his family! Thanks so much for sharing his story with the world, many prayers for Tripp that his journey will be what it is supposed to be and that love will follow him every step of the way. Bless you all.
    Penny (from Canada)

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  59. I stumbled across your Facebook page which led me here...needless to say I am speechless, your story definitely touches my heart, and please know that I am praying for your little man and your entire family!

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  60. Courtney,
    I have only known of Tripp's story for a few weeks now. I just went back almost a year on you blog looking at posts and pictures/videos and, "WOW!" a miracle you do have! Every day when I get on here to see what's new, I see Tripp's sweet face and it melts my heart. Oh how I wish he could just do the things a healthy 2 year old boy could do, but you're right God sent him to touch lives, and oh the lives he does touch. He sure has touched mine! Not an hour goes by that I don't think of Tripp. Tripp's story has touched my heart like no other and I thank you so much for sharing it with us, I am sharing it with others every chance I get. I'm always praying for Tripp, a hundred times a day it seems like. I pray for you. You truly do inspire me as a mother. My heart breaks for you though, I can't imagine your emotions, you are a very strong person. Because of Tripp's story, I appreciate more. My son is able to see, talk, play, I no longer take those things for granite. I thank you for that, you have opened my eyes with this story. My heart goes out to Tripp, to you, and to your family, I'm just another complete stranger who found this heart-touching story through Facebook, but I am praying and believing. Love and prayers, Casi

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  61. My wife sent me your way and told me that before I opened up your blog to please have a box of tissues with me, because she knows just how tender hearted I am. All I can really say is how you have touched my family and myself in ways you cant imagine! Tripp, you are one hell of a fighter and ten times the man that I will ever be, keep strong little man! Courtney, you and your husband as well as your beautiful Tripp are in OUR prayers and will continue to be every night and day! Thank you so much for every entry and telling his story, it makes me appreciate my wife, children and life that much more!

    Always, Johnny, Christy, Nathan, Brandon and Sophie!

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  62. I just wanted to let you know that you're little man is an absolute hero in his own right! Your courage along with his is amazing and I want to thank you for sharing your story with us. I currently live in Baton Rouge, La, and his story has traveled farther than you know!! He is truly an inspiration, and your right, he is a little Angel. We all can learn from his courage. Keep your head up and keep the updates coming. God Bless you and your handsome little man!
    -Jennifer K.

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  63. Bless your hearts. And Courtney, your story is amazing. How is Tripp doing? And any new developments with Randy? Shame. Keep up the good work momma, and you too little Tripp! I send my love and prayer to your home. XOXO

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  64. I read your story yesterday and have not been able to get you out of my mind. We lost our precious grandson a year ago, his kidneys destroyed at birth. We believe in the sanctity of life. I pray for you and lift you and Tripp up in prayers. Live everyday making the best of it, find joy where you can. That's what my daughter and son inlaw were able to do. Here we are a year later and the grief is still raw, but oh the joy of the seven months we had him. I know you treasure everyday with him. I grieve with you but celebrate his precious life and the love that you have for each other. I pray god will continue to be with you all the days ahead. If you are like we were we prayed daily for a miracle, we found in the end we had our miracle all along the miracle was Aidan. He changed our hearts and lives forever. No feet our too small to leave a footprint on the world. God bless you, sweet baby and precious family.

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  65. I first heard of your story on WWL and have been following ever since. You and your beautiful son are an inspiration. Every time I visit your site it brings tears to my eyes. I am the mother of a beautiful 2 year year old, you and your story have made me realize how precious life is, and how blessed I am.

    You and your family are in my thoughts and prayers. God bless your precious family.

    P.S. - That little man sure knows how to rock those drums! ;) Keep on rockin' Tripp!

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  66. Courtney, thank you for finding time and strength to blog about your life and your precious child! My heart is breaking for you two! You ARE an amazing woman, fabulous Mom, and a strong Christian. Just like others have said before me, you do set an example to others with your faith, sacrificial love, patience and trust in God. Praying for extra strength and comfort for you and your sweet Little Drummer Tripp!..

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  67. Courtney,

    I don't know you or your son, but your story is amazing and you have a precious gift, he is absolutely adorable. Thank YOU for taking your time to blog about you and your son, it really is raising awareness, and I hope there is a cure one day.

    You are such a strong woman, and though I don't have any children, I hope I can be half the mother you are one day!

    Keep the faith and know that you are in the thoughts and prayers of many!

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  68. Hello my dear,

    My name is Karine and I was looking for a picture to put on my FB of hands praying and I clicked on one that lead me to this web site. I was looking for praying hands because yesterday afternoon my husband and I found ourselves in a place we would have never thought would be. Giving CPR to a gardener that had got stung by a bee and was dying of anafalactic shock.In a blink of an eye he was gone and then he came back. After the paramedics arrived all I knew to do was to pray with his wife and asked that Gods will would be done and hoped it was not his time. I had a friend of mine just pass away form cancer about a year ago. He was 34 and left behind two young boys and a baby girl. I remember praying that prayer with his wife too. The gardener was given a second chance and Mike went to be with his Heavenly Father and when he passed he had a big smile on his face.We know he saw the face of God. I just want you to know my dear that I know that there is no co incidence in my life and that God has blessed me with many friends and also even with people I just pray for randomly on the street or at the airport. I think your journey is for a greater purpose and that God will take this walk and he will change lives because that is what He does. He uses the weak to lead the strong. May God Bless you and your family. I did send you a FB request if you would like to get a hold of me.rayer. I am going to post his little hands on my FB page right now add this link. If it wasn't for the gardener I would never have met you and your little man.

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  69. Thank you so much for blogging about your experiences. I am a new mom to a sweet boy with GERD (but truly not a severe case) and have been guilty of losing patience on days where he screams all of the time because he is uncomfortable. My friend lives in Destrehan and posted this blog on her FB page...I'm so very thankful that I read it! You have given me the gift of perspective, patience and more love than I thought was possible. I haven't met Tripp but wish I did so I could give both him and you a hug. You, Tripp and your mom are in my prayers! God Bless you all.

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  70. Thank you for bringing me back to reality and making me see what really matters in this life. I hope you know just how lucky Tripp is to have you. And I also hope you know just how happy you must be making God.

    I will pray for you and your sweet boy!

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  71. I will be praying for you and your sweet boy. You are one lucky mama, and he is one lucky son. Love to you both.

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  72. Thank you so much for sharing your story! This touched my heart deeply....I am so blessed by your beautiful little boy's life and by your beautiful spirit! Dear friend...you are in my heart and prayers!! Much love ~ alice **I added your button to my blog!! http://alicelynnalfred.blogspot.com

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  73. I am a pre-nursing student who in my studies on EB just came across your blog. I am also a new mom, my baby is 14 months old. I don't know what to say in writing a comment here, but I just wanted to say thank you for being what sounds like the BEST mommy to your beautiful baby. I never want to imagine something so difficult for my child, so I can only empathize with you and your story. I know how much I love my beautiful daughter, and your words just touched me because I too would do anything for her. I love how you said you wanted every single second of your son's life to be the best you could make it, and that he would be loved, so very loved. You are a good mom. A fantastic mom. God bless you and this precious, precious child.

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  74. Im a new reader to your blogs and I will continue to pray for you and your son.My daughter was Born May 2,2011 and was diagnosed with Congenital Hypothyroidism and it has been very hard on us all but seeing you and your sons story has given me the strength to stay positive and never give up!We wanna send you some things from my girls we hope you get them soon:)!

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  76. What a miracle Tripp is and what an angel you are! Tripp has truly inspired me to look at life differently. You have helped me to realize that sometimes I take for granted having a healthy son when there are sweet angels like Tripp who deserve that more than ever. Your patience, abounding love, and grace with your son is remarkable. But I know you get this motherly strength from God our Father, and let me tell you. He always comes through in the nick of time =). Trust in Him always for He is Able! My prayers will be with you, your family, and Tripp until that little man of yours has fought this thing!

    Love Koen (who loves to give Tripp kisses through the computer) and his Mommy!

    P.S. Koen and I love jamming out to Tripp's mad drumming skills! What a blessing he is! =)

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  77. You are such an inspiration. What a wonderful child you have! Continue being strong and know that you both have so many people praying for you!

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  78. The best gift your son received was you as his mommy. You are truly an inspiration. You and your precious boy Tripp will be in my prayers. May God bless you both.

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  79. Courtney, I just came across your Your Life contest entry and voted (ur #1 - woo hoo!!!). I don't know if it's possible to edit it, but your video link is broken on there. Just wanted to let you know. Hugs & Blessings

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  80. Your baby is precious! <3 I continue to prey for you and your family. You truly are a strong mommy. Great Job! You inspire me every day.

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  81. There are those who fret and frown at the rain. and then there are those who are thankful for little moments that become memories, who have gratitude for sufferings that define their lives. I have met many people who inspire with their words, falling apart when the winds gets stronger , and I could be one of them myself, but I have only heard of a few who inspire with their actions against all odds.

    No words can summarize the cries of a mother's heart, but if it could be fathomed in to words...

    There will never be a moment
    That I would not think of you
    There will never be a time
    My heart would not beat for you

    There will never be a day
    I would not want to be with you
    There will never be a night
    I would not want to dream of you

    There will never be a plan
    That does not include you
    There will never be a bedtime
    I would not want to sleep with you

    There will never be a season
    I would not want you
    There will never be an year
    I would not be with you

    If there ever will be one
    That happens to come by
    It will be, my dear
    The day that I will die

    Thank you for being a blessing, not only to your son, but to the world.

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  82. What a precious angel! And you, you are an angel as well...with your pure love and dedication to this handsome little man! God Bless you and sweet Tripp! My thoughts and prayers are with you both, as well as your mother for being an amazing grandmother <3

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  83. Tripp is the most inspiring little fellow I have ever read about - a hero in his own right and so are you! Heroic mothers are gifts from God. God Bless you, your lovely son and your family each and everyday! I love that he loves drums and is drawn to music. Prayers and blessing<3

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  84. Hi Courtney & Tripp! I started reading your blog & heard of your story thru the Bump. I am in awe of what an incredible mother you are & what an inspiration and strong little warrior Tripp is. God bless both of you!!

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  85. You and Tripp are very beautiful people. I feel you are a great blessing to eachother. Our family will keep you all in our prayers.

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  86. What an incredible story. God bless you for your strength and optimism. I am sorry that this happened to your family, but am so glad that Tripp is such an inspiration to others with his bright attitude. I'll be praying for you both!

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  87. Hi Courtney,
    I have been reading your blog for a few months now. I first encountered a link to it from another blog (don't remember which one now) while probably looking for deals or entering a contest. I remember seeing the blog button and a little baby with red spots all over his face. I didn't know what they were at the time and thought it was a baby who had just gotten into a big bowl of strawberries or gotten red markers all over his face. I clicked on it and was shocked but fascinated to find out the reality. I had never heard of this horrible disease before but now thanks to your blog I am aware of it now. I am a mommy of a healthy 5 year old girl and you inspire me to thank God that my child is healthy, and to think that no matter how hard parenthood is, it could always be worse. Please don't take this the wrong way, I just admire your superhuman strength and total dedication to your little boy, and you remind me every day not to take the little things for granted. Kudos to your mom as well for helping you in this task. I enjoy reading all of your updates and look forward to watching Tripp continue to grow, and follow your journey. I believe that Tripp was sent to you for a purpose, to teach us all about compassion and empathy, and he chose his mommy well. I am a Christian as well in that I believe in God and Jesus and heaven, and even though I don't follow a particular religion, I am open minded to all possibilities. I have read one theory that I think would apply perfectly to you, and that is that souls choose their life path before they come down to Earth. They choose who their families will be, what their lives will be, and even choose when to depart this Earth after the learning of their soul has been complete here. After they have fulfilled their purpose here. Highly advanced souls purposely choose to come to Earth as not perfectly healthy people, yes even as deformed or diseased people, because it shows the extreme level of maturity and humility and enlightenment of these souls. I believe Tripp is one of those souls who is highly advanced and has come to teach us a lesson. You are very special that he chose you to help him achieve his goals, and I think you are doing a fine job in making us aware of this disease, of life's daily struggles, and of being thankful for the little things. Hope you don't take any of this the wrong way, I mean it with much love and sincerity and best wishes for your family, always.

    S.P.
    Ontario, Canada

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  88. I came across this blog through a friend of a friend's blog...You are an amazing mother and your son and family will be in my prayers. Thank you for sharing your story. God Bless you both.

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  89. Tripp is absolutely beautiful!! It brought tears to my eyes when I started watching the video of him showing you his eyes and what not, but then realized that he is surrounded by wonderful people who love him and take great care of him. You are an amazing mom and he knows it!! Stay strong and positive! God bless you and Tripp!!

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  90. I just found your blog, Courtney, and I don't have words. I will pray for you & sweet little Tripp.

    You are an incredible mother and just the perfect mom for Tripp.

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  91. It breaks my heart to see, but I am so happy for the attitude you have despite the effort and stress that must be involved. You are very strong and I am praying for Tripp and you.

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  92. I am so glad I got to read your story Courtney even though I haven't stopped crying. I never knew about this condition and I am so moved and inspired by your words and the way you have shown such faith and love...in so many ways. You and Tripp are showing the rest of us how we should be living our lives with purpose and great love for the Lord for all that we have (and all that we take for granted). You both are in my prayers and I know I am a stranger but I would like to know if I can help you and Tripp. Please let me know how I can help ..is there a fund set up for Tripp or EB research? Post information if you can so others can help too.

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  93. I happened upon your website through babble.com's contest. Which you clearly should win. I am mother to a 9month old boy and have struggled with the transition. I have spent the last 30 minutes weeping over my laptop, for you, for that precious baby boy of yours. For the love I could feel through your laughter and singing. I can sense your immense pride (that banging to the beat is phenomenal! Does he also like the piano?). I believe Tripp is an angel. And I believe I very much have been touched by that angel. I know no one wants to the one to teach the lessons, but at the risk if this implication, I need to thank you for opening me up to more of the love I hold as a mother and less of the frustrations. That I should cherish all the days with my healthy son as much as you treasure each day with yours. And I will pray for you, for continued strength, for peace, for the understanding that this walk on Earth is short and temporary, and that you and your Tripp will be connected forever, and in heaven with eyes that see and skin that heals. I thank you for your story. Keep sharing it. And may God bless you and your family. With all my love-

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  94. Love and Prayers from Grand Rapids, MI. Keep fighting for your beautiful little boy Courtney. Love,
    Teresa

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  95. Sending lots of love & prayers to you & your family. You & Tripp are truly an inspiration. Love, Alexandra

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  96. Courtney:

    I'm in awe of you and your family.

    As a mom, I wish I could help you take away Tripp's pain. But I think you do that everyday.

    Your compassion and perseverance are blessings.

    I'm praying so hard for you and your family right now.

    - Andrea

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  97. You are a beautiful woman! God has so many blessing in store for you when you go to your Heavenly reward.

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  98. Everytime I think about ya'll or read his story again or see his cute lil face in a photo, I stop and pray and thank God h is still here and for ya'll , this is the type of strength that the word of God is filled with all those people of Old Tripp and his precious family, ya'll are made of such. God bless ya'll and thank ya'll for sharing with us...KNOW that we are all behind ya'll the whole way praying...think about the footsteps in the sand that poem well if you could look back behind you spiratually you would see thousands even tens of thousands prayinf on their knees not only for Prince Tripp BUT also for ya'll his precious and loving family...God bless ya'll know we support and love you all...we count ya'll as family, our family in Christ..Please listen to the song "Mercy said No" and "Amazing Grace (my chains are gone) " they will both bless and touch you as they have gotten me through such hard times <3

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  99. I am going to be praying for Tripp and for you. I believe that God can heal and I believe that you are all a beautiful miracle family.

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  100. i salute you Courtney! Tripp is very an adorable baby and I love his smile too =) I just followed you in my email..Godbless!

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  101. Hi courtney. I salute for being a strong mom.Tripp is an adorable baby I love his smile too! i just followed your blog via email.. Godless!

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  102. I have been following your blog for a few weeks now. You and Tripp have become a part of my everyday life. If I can be even a fraction of the mom to my son that you are to Tripp, I know I will have done right by him. You are truly an amazing person and mom! I am a single mom as well, and I've learned that being a single parent is hard enough. You are my hero for doing what you do...and doing it with a smile! I recently saw a video on youtube of a 12 year old boy living with junctional EB...if he can do it, I know Tripp can!

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  103. My son has Asperger's and some other diagnoses. I am home with him today because he is having a bad day. I can't even properly express how I feel. My heart goes out to you for you & your son's struggles. I will pray for Tripp every day & for you. I am so glad that your parents are supportive.

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  104. I just came across your blog. I have no clue who you are. But I do know, that you are one of the strongest women I have ever "met." Without knowing you, I know that you care for little Tripp more than anyone could ever read, see or imagine. I admire that there are parents like YOU who care for their children as you do. Tripp is a beautiful little boy. I only hope his miracle continues, as I know you do too!

    and by the way.. I am a HUGE (die hard, cried after the game) Alabama fan. But for little Tripp, I'll yell GO TIGERS!! any day! <3.

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  105. Hi Courtney,
    Your story has touched my heart. Baby Tripp is in good hands with you. He is a handsome little boy :) Your such a wonderful & brave mother. I'll be praying for Baby Tripp & you as well. Keep up your good work. Godbless you both & take care

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  106. Courtney,
    your story, brings memories back.... you are such a strong mommy and Tripp is such a strong and happy baby. I had a brother who was born with EB back in 85', my mother was told he wouldnt last past the age of 3.... my mother was a widower with 3 kids and worked soo hard to provide for us.. my family helped when they could and the whole experience left me knowing that everything would be okay. I'm lucky to have spent 10 years with my brother Arnold and I'm soo greatful for that. He taught me soo much, little petty things dont matter, love is huge, he gave a new meaning to strength, and the memories he left were for a lifetime. Your story is inspiring and I pray for baby Tripp, he's soo cute with his smile!!

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  107. what strength you have Courtney - to find meaning in this fate is a testament to your faith. I am speechless at your tragedy and can't believe that one person has so much love to give. You are in my thoughts.

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  108. I know you don't know me from adam, but Tripp and your love for him has truly touched my heart. You may never see this post because I know you're so busy and have lots of comments. You are a true inspiration to myself and all the moms around the world who, like myself, have a little one with some type of debilitating ailment. I commend you for your hardy fight for your little love. He is just precious. I showed my son and he said "Awww, is he itchy too mommy? Does he hurt?" It broke my heart. Its that unconditional love that children have when they can relate to another, that we should all learn from. They don't see disabilities, they see a friend, another friend who "needs help from Jesus" as my 3 yr old says. :0) So we have said a prayer for you, Tripp and all of the doctors and nurses, as well as all of your support system. We will continue to say prayers for you all each day. Please do the same for my son, Kalen. He has no pinpointed diagnosis because everyone is stumped, but it is dermatological and immune system. I just had to tell you that I don't know you but I love you. Mother to mother, you are amazing. I'm in deep east Texas so we're practically neighbors. :)

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  109. Wow, I am in tears thinking about what you have gone through and are still. On the other hand, I have watched all the you-tube videos and he is such an awesome little boy. You have a great family and My family and I pray for you all every day. Thanks for everything. With love Jeremy Little and family

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  110. I just came across your site from Aspieside. I wanted to leave you a comment that your story has me moved to tears because of the love you and Tripp so obviously share. Thank you for sharing the beautiful relationship you and Tripp have.

    I'll be thinking about you and Tripp as I hug my own sons tonight. Sending you and Tripp lots of love and light.

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  111. I have never been so touched! I am amazed by both you and your beautiful son. I cannot stop thinking about your little boy--I will forever see his cute little face and think what a blessing God has blessed us with. Thank you for sharing your story and I will continue to pray for Tripp. Sacramento, California is praying for Tripp like crazy!

    Kelly Cunningham

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  112. What a remarkable mom you are to that precious little boy. Tripp's story is so touching. Sending prayers for better days and brighter tomorrows. ((HUGS))Lori
    http://lorisartsyobsession.blogspot.com/

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  113. Courtney even though I am an ENT Surgeon and deal with patients difficulties day in and day out your story is so touching-It touches the mother in me and my heart goes out to you and your little one. You are a very brave and strong lady. As an ENT Surgeon I have tracheostomised children and I know it is one of the toughest things to deal with as a parent. Your story did bring tears to my eyes.My own daughter had a skin problem as a 1 year old and we had to bandage her up for months.I pray your little one gets a miraculous cure .

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  114. God bless you my sister in Christ, you are so strong. My son was born 4 months premature, everyone said he would die immediately, and they kept repeating it, and he kept proving them wrong, and he had a milk tube, and oxygen tanks, when he came home from hospital which wasnt until 6 months after he had been born. Thank God hes got through all the hard stuff now, hes turning 3 soon, and hes a happy boy. i can only imagine some of what you are facing due to that. but dont give up, keep your faith in God, his Word says that by Jesus stripes we were healed, it has already been taken care of, you just have to recieve it by faith, which im sure you have, i believe your the healing of your son will be manifest very soon. You are a very loving mother, your story has really touched me,i will keep you in my prayers

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  115. Hello Courtney and Tripp,

    I was first tuned onto you and Tripp’s story by my girlfriend a couple of months ago. I am not one to let my feelings get the best of me, yet reading your posts about Tripp makes even me fight hard to hold back tears. It was very hard to read your last post concerning your trip to Minnesota and what came of it.
    Ma'am I can't say with absolute certainty why these things happen and I doubt even the wisest person on Earth could say with any degree of certainty either. Some Buddhists and Christian philosophers have theorized that in observing the suffering of others humanity is moved to be more compassionate toward others.
    It's hard to maintain a thought because I want to cry right now and I should be asleep because I have to work in three hours but somehow I feel compelled to say that your son's life has impacted me in ways that have humbled me and showed me a new appreciation for not only my own family but for complete strangers I have never met. Maybe God sent Tripp to be a beacon to the rest of us; I've seen the video of him playing his drum and the smile he gives rival only the memories of my own little girl smiling up at me for the first time. His smiles can shatter even the hardest of hearts and that’s a power precious few people have these days.
    Your strength and by extension the rest of your family should be commended. I don’t know what destiny Tripp will face in the time to come, only that it is my fervent hope that you can provide your son with as much love and comfort as humanly possible.
    May God bless you and yours.
    Humbly yours,

    David Moreno

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  116. Courtney you are an amazing mother don't let anyone tell you different. A "true" mother would do exactly what you are doing. You are an angel and Tripp is a saint. Never give up miracles can happen. God is watching over you and Tripp everyday. He is the only one that decides when we leave this earth. I pray for all of you everyday. Stay positive....Tripp could take a turn for the better and in the future he may be able to have some kind of transplant. In the mean time enjoy each and every moment with him as I'm sure you do. You have taught me to do the same with my kids and I thank you for that. Love and Prayers from MN.


    Kathy Czeck

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  117. I will continue praying for Tripp from this point forward! I just found your blog and am so touched! My Papa always used to say, "Your problems are only the magnitude which you allow them to be." I forget this sometime, but seeing someone going through so much and handling it with grace is a testimony to that!

    Arielle

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  118. Hi Courtney,

    I've been following your blog for a little while now, but have been too shy to comment. I just want to let you know you are an amazing mother, and an incredibly strong person. You are such an inspiration to me. Our daughter was born 16 weeks premature, with a Grade IV (the worst) hemmorhage (brain bleed) on one side, and a Grade II on the other. We have struggled with a lot, and it is still a constant struggle. She is at home on oxygen, and has her own set of problems. But whenever I read how strong you are, I am filled with hope. You are such an amazing person. You and Tripp are in my prayers every night. Tripp is such a beautiful boy. I was so very sad to read how mean people were being to you. I know many people told us to just "pull the plug" on our daughter, because she may have brain damage from the bleeds (we won't know until later) and her quality of life could be poor. NO ONE can tell you what to do in a situation like that. You are doing amazing, and I applaud you every day. And I'd be doing everything you are. Please know I think about you daily! When I see Tripp smiling and playing, it brings the biggest smile to my face, to know he can smile and play after having been through so much. Much love to both of you!

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  119. Hi Courtney and Tripp,
    You are both so inspirational! The beautiful job you have done raising such an amazing baby boy is wonderful. Your story is so touching and I pray every day that Tripp becomes the miracle child. I am so glad music is in his life. Music is such wonderful therapy. Please know that you and Tripp are in my prayers every day. Always.

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  120. I come in agreement with you and pray for Tripp. By His Stripes, Tripp is healed! Thank you for sharing your story and Tripp's testimony. May God's countenance be upon you!

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  121. I just wanted to say that you are an amazing mother. I couldn't imagine raising my 7 month old as a single mother, without the added pressure of serious health problems that affect her everyday care. You truly are just amazing and that is why God chose you. You handled that rude woman's comment with such grace. You really are someone to look up to. Tripp is very very lucky to have you as his mommy.

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  122. As I type this, tears run down my face...Oh my...I pray for healing for your son, Tripp. My heart broke nearly every sentence I read and every photo I viewed. I, too, deal with a medical issue for my daughter who's now 18. She was dx in March of 2007 with Friedreich's Ataxia. She has lost 85% of the use of her legs and is in a wheelchair in high school and uses a power scooter or a walker at home. It's hard watching our children suffer on a daily basis and then when we, ourselves, are ill we take it for granted thinking "we're SOOO sick". Tripp is a very special boy with a very beautiful and lucky mommy in you! I applaud your efforts in doing everything for your son, as I have done for my daughter over the years. It's a tough job but our children are the best gift God has ever given us. Thank you for sharing your wonderful photos of Tripp. God chooses us for a special reason...I think because God knows that we are the most special of parents and will do everything in our power to love our children like no one else ever could.

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  123. God continue to grant you peace, favor, and supernatural healing in the Name of Jesus! I want you to know that I am praying for you and have shared this with several friends who are my prayer circle. Amazing! That sweet boy :) Much love from Texas. xoxo

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  124. God bless you, Courtney! May you be strengthen by the Mighty Spirit of God. I pray that your precious baby be healed and restore. May you be an encouragement to the mothers who are facing situations with their child(ren).

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  125. What an AMAZING, precious, and intelligent little boy. I am so touched by your story, I cannot even hold back the tears. You are the definition of a STRONG WOMAN, I cannot even begin to imagine what you have been through. You are an AMAZING mother. Your love for Trip is so evident in your words, pictures and videos. I had a big smile on my face after you asked him how much he loved you, and he opened up his arms to show you. He truly loves you. :) May God continue to bless and keep you both. Amen.

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  126. He is so adorable. You are a strong, amazing mother. I cant even begin to imagine what you have been through. God has blessed you with the best baby in the world. I hope keeps giving you wonderful blessing with your little one :)

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  127. My prayers go out to you and Tripp and hoping for a cure. I am still crying as I write this and as a mom I am so touched by how much you love your son and he is so very lucky to have you. I had not heard of EB and want to thank you for bringing awareness to such a horrible disease as no child should have to endure something so painful. Praying for your sweet beautiful boy.

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  128. I just found your blog and consider you to be an incredibly strong, beautiful and compassionate woman. I don't know why God puts these types of trials in our lives but I wish you and Tripp all the best. It breaks my heart to see a little precious child suffering. I hope you can continue to find ways to keep him as comfortable as possible. You really are an inspiration.

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  129. My Prayers go out to you and your beautiful son! I cannot imagine how hard this must be on you but I do know that if it was one of my babies I would be doing exactly what you are! I am truly touched my yours and Tripp's strength and again you both are in my prayers!

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  130. Firstly, my warmest greetings from the UK, I wish you and your family have the best christmas ever!

    What a beautiful little chap Tripp is, such a happy and smiling boy. I have a son also who is a little under a year and I just want to say how much I admire your strength in dealing with the difficulties of Tripps affliction.

    But as a mother, I know that you would never ever have it any other way, nor regret a second spent cherishing and caring for your beautiful boy.

    You truly are amazing, Tripp is gorgeous and thank you so much for sharing your story.

    Emma, UK

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  131. I cannot help but cry reading about your beautiful little soul Tripp, but I am also so grateful that God gave Tripp a mommy like you! You are an inspiration and I will hug my own three little ones tighter tonight because of the love you have shown the world for your son. Thank you for being an amazing person. I will pray for Tripp every night from now on that he enjoys comfort here in this life. He will be an angel without a doubt in the next, a lovely angel watching over you. Hugs to you and Tripp this Christmas! Please keep up this important life you both live!

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  132. Dont even know what to say, he is one amazing kid, how I wish there was a way that pain and suffering of his could be taken away,love you for your efforts and your kid for being so brave and lovely. God Bless you both

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  133. Came across your blog. I am a mom of three. Some days are very trying and it is difficult to remain positive. What an example of a true mother you are! You,like Mary,said "yes" to God's prayer. You are an inspiration. What a beautiful baby boy. We will pray for you. He is your own personal guardian angel. Merry Christmas.

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  134. I am almost 30 years old and am in constant daily pain as a result of an accident. I have found it is helpful for me to read others' stories so that I can look beyond my own pain and pray for those who need God's comfort and strength. I KNOW the God is working through my story AND TRIPP's story to bring people closer to Him. You are a true testament to the amazing strength of a parent Courtney. Tripp could not be in more capable arms than yours Courtney. You are an amazing blessing to Tripp and I'm very thankful that he has you to take care of him, to show him and tell him how much he's loved everyday. THANK YOU for sharing your story. Thank you for sharing Tripp's story. It's helping me and it's helping others. I will always believe in miracles and in miraculous healing and I pray that Tripp is healed.

    If this can bring any sort of hope to someone who might read it, that's why I am posting this:

    While I prayed for this child this morning, I asked God, "How can this be? Why? This poor child is innocent and hurting! Why does this child endure this? What could possibly come from this?" He answered me, "Child, this child is made PERFECT! He is my vessel! He is the exact tool being used everyday to draw others into my kingdom! Although through your natural eye you see pain, sores, disease, hopelessness, and weakness... I see comfort, beauty, health, joy, strength and compassion! This child has brought many to me! He has brought the hard hearted to be compassionate! He has brought the depressed to have joy! He has brought many that were weak and caused them to be strong! This child has brought LOVE to so many and THIS CHILD is MY CHILD! Perfectly made indeed!"


    I am praying for you Courtney and for your blessing of an amazing child--Tripp.

    With many heartfelt prayers from Montana,
    Jacqui
    facebook.com/jacquigrace

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  135. Wow! You and your family (Tripp & your mom and dad) are just amazing. As a mom and now a nana I cannot imagine how hard it must be to see your little guy in pain and struggling so hard every minute. He is blessed to have you as his mom - God definately knew who would be best for him. I will be praying for your family, and I know God will be there for you.

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  136. I cannot help but cry.
    You are one strong mommy !

    I hope all the best for you all
    and I will pray for Tripp.

    Best regards

    Marianne from Finland

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  137. Wow. He's a little struggler, and you're one really strong momma ! There are so many people, who have read your story, and you have done a really precious thing to other kids with EB and their parents with spreading up information about this sad diseas.

    I wish only the best for you, you're parents and Tripp. He totally is a gift from above, an angel sent to earth. Don't worry too much from the future. Live this moment, and give your everything for this child, cause he has deserved it. Remember, that not only the doctors who have done an amazing job, but also you have given this little drummer boy a gift, that anybody else can not give, and anyone doesent get. That gift, is the love, that a mother feels for her child. That's something, that a child can not live without. The gift of life, that Tripp has receaved, is given by the doctors and you all together.

    I will pray for this little sweet miracle !

    Lots of love and power,

    Kiia from Finland

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  138. You are an amazing person! I wish you all the best and will pray for you and Tripp. People like you inspire the world.

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  139. hi,i'm from Finland and i cry reading this story. It's story about very smailing little boy,you have a amazing little boy.
    all the best for you and you family.

    henna

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  140. I pray for Tripp and your whole family<3 Couldn't help but crying while reading this.
    Prayers,
    Anette from Finland

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  141. Hi, I'm from Finland too. This story is sad it also make's people's think. I have made a presentation about Tripp on my computer. I'm starting to cry almost every time when I watch It. Thank you for making this blog. Go and check out my blog. There's one text about Tripp.. I can write it in english...
    www.anna-abreuxd.blogspot.com

    PS: Sorry if there eas some spelling mistakes. I'm 12 year's old

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  142. You know a lot more about life than... I honour you with smile, for Tripp. Merry Christmas.

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  143. There was an article about Tripp in finish (Finland) magazine. I've been crying for an hour for your precious baby. It really breaks my heart to know that a little innocent soul has to suffer like Tripp.

    Still I thank God for giving him a mommy like you and family like yours. The most important thing is that he knows he is loved. And he really is. I can tell only by watching the videos and reading this blog that he really is your world.

    I'm so glad that you know that whenever it's his time to go he will go to heaven to God who loves him more than any human being possibly could and that's where you'll meet him one day. Tripp, you and your entire family are in my prayers.
    I really don't even begin to understand what you are going trough but the little that I do understand is that you are amazing people, especially Tripp.

    I'm not much of a writer but all I want you to know is that God is an awesome God and he is going to take care of Tripp. For God and Tripp the day he goes home to heaven is a day of joy. And if it's not Tripps time to go yet I pray that God will heal your son (because I know he can). Tripp makes such a difference in peoples lives, including mine. He is a brave little fighter.

    http://www.youtube.com/watch?v=ijAKh_C89UE

    May God bless you all and give you strength through tough times.

    -Heidi-

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  144. A msg from FINLAND:
    THERE IS HOPE FOR TRIPP!! <3 <3

    I HOPE AND PRAY THIS MSG DOES NOT DISAPPEAR IN THE VAST SEA OF POSTS HERE..

    I was lead to this blog also by a Finnish newspaper article and am compelled to share about the hope and love I know. I see you are a beautiful and caring mom -a child like Tripp could not ask for more when it comes to his mom.
    Yet you must feel desperate and helpless about your desire to do soooo much more for him..

    I want to minister hope to you and Tripp... No matter what the ppl say God's will is ALWAYS to HEAL the SICK. Jesus NEVER once turned away any sick ppl that came to Him, not even the Cananite woman (Matt 15:22-28).. I can only imagine (can't even begin to claim I would understand) what you must be going through with all the prayers said in mind yet not seeing any "visible results".. It's very easy to add it up as "not being the will of God".. That's what most of us would reason yet battling in our hearts with the thought that doesn't make sense: "How come a good God allow something like this.."

    All I know is that Jesus came to do the perfect will of the Father and to destroy the works of the devil and He healed every sick person that came to Him. And I so much want to encourage you to hold unto that despite the current circumstance. He is the same yesterday, today and forever. I SEE GOD HEALING SICK MIRACULOUSLY MORE THAN EVER BEFORE these days.. Incurable, terminal diseases.. He's making the lame walk, the deaf hear, the cancers disappear, you name it. I know this post will raise a bunch of posts rebuking me for giving false hope. But I know the goodness of my God and I know it is NOT A FALSE HOPE. I have seen way too many miracles to believe otherwise.

    Just last week I came home from a visit to a church called Bethel in Redding, CA where I saw dozens and dozens of miraculous healings in a matter of about a week. Metal disappearing out of ppls bodies etc.. About a month ago I spoke to someone here in Finland who received prayer last July and God did an "overhaul" to her: She was healed of severe sleeping problems (had to take meds to sleep), bi-polar disease, schizofrenia, depression, spinal arthritis an asthma all at once. Before she was retired because off her illness, now she's back working completely discharged from all the diagnosis -and this is medically verified by the doctors!!

    There is a revival happening not too far away from you, in Mobile Alabama, where hundreds, perhaps even thousands of ppl have been healed by God. I don't know of it would be possible for you to make your way there, but they've witnessed innumerous amazing miracles in that revival. Here's a couple of examples:

    http://www.youtube.com/watch?v=A2jYKGxAlms&list=UUcMzN34zfgrTNL0fuba3DBQ&index=28&feature=plcp

    This lady was paralyzed for over 22 yrs:
    http://www.youtube.com/watch?v=qgF9ffhnae4&list=UUcMzN34zfgrTNL0fuba3DBQ&index=39&feature=plcp

    You can find their schedule here:
    http://bayoftheholyspiritrevival.com/featured_events.php

    Also.. if you feel like you want some encouragement to your faith I warm-heartedly recommend the teachings of Bill Johnson from Bethel church. He just has a very unique way of putting God's goodness and love into word that'll surely bless and lift up your faith..

    God bless you,
    You are Precious!

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  145. Hello my name is jesus I have 23 years old and from Seville Spain I have two children ages 3 and 4 beautiful and healthy thank God.
    I have taught my children the videos and I prayed with them .. TRIPP
    TRIPP has won what we all try to get day to day
    The kingdom of heaven, I pray for TRIPP

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  146. Hello my name is jesus I have 23 years old and from Seville Spain I have two children ages 3 and 4 beautiful and healthy thank God.
    I have taught my children the videos and I prayed with them .. TRIPP
    TRIPP has won what we all try to get day to day
    The kingdom of heaven, I pray for TRIPP

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  147. You´re a lovely mum,keep sure that Tripp is very proud of you.
    I wish you the best!!!

    Spain

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  148. What a little stud. Sounds like he has been through alot and he still looks so happy in all the pictures. What amazing parents he has. He is truely blessed to have you!!! May god bless your sweet little one.

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  149. I just wanted to say we are praying for your little angel! I have a little 17 month old drummer boy of my own and when I read Tripp's story I just kept thinking our little guys could have been best of friends if our paths crossed. We will pray for you and hope that your little fighter is there to bless your life for a long time and that they find a way to heal your angel! God bless and all our love and hugs!

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  150. What a beautiful little boy. I am praying for him endlessly, along with an endless supply of tears. I am also praying for you, you are a strong woman for taking this all in on your own. I am so glad for you both that you have your mother & a team of doctors working with you everyday. I know as a mother myself, I would fight to my last breath to do the same. I am so deeply sorry that people are giving you so much grief. They do not know the struggle, the sacrifice, the WORK it is to be a mom, let alone to be the wonderful mother YOU are to a wonderful boy who requires so much more struggle, sacrifice & work. The love part is the best part, the easy part, so I didn't feel the need to list that; It's a given that you love him endlessly. I'm glad you realize their words are out of ignorance. I'll continuously pray for you, sweet little Tripp, & all the other EB cases out there, mild to severe. Thank you for sharing this story.

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  151. Hi! Iam from Finland!

    I just want to tell you that you are very strong mother! Youre son is so amazing strong boy. He smile all the time, and makes me happy too :) The videos are so cute and he is very talented! I hope that everything is going well!

    My son is 1year and 4 months old. My son has "atopic skin" i dont know its right. He has dry skin, and sometimes red spots everywhere, and it itches. In summer its okei, but when is cold it going back and everywhere are spots. :(

    But, i hope that youre family going everything okei.. I hope you understand what i writed :) Big Hugs to Tripp!

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  152. All my problems are so smaal compared to the suffering You and Tripp are going through. I would give so much away, just to hear that he is comfortable:(
    Thank You for this blog, that makes people evaluate their life more and understand what is important in life.

    You are in my toughts,
    Marjan form Estonia

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  153. I dont cry much, but your and Tripps story have touched me deeply. I wish, you and Tripp will have a wonderful christmas together. Also i wish, that Tripp could grow up and share his story with everyone, and tell everyone how strong and loving mother and family he has ! You will be in my toughts.

    Finland

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  154. I don't have anything I could say, but I really needed to tell you that I'll be praying for you and your gorgeous son. My daughter is 4 days older than Tripp. Thank you for sharing your story and wrecking my heart!
    God Bless!
    Courtenay from Canada.

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  155. Tripp is a beautiful little boy. His smile is amazing and he is so cute. As a mother my heart is breaking for you both. This isn't fair. I wish things were different. Sending you both so much love. xxxxxxxxxxxxxxxx

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  156. Like many I am a new reader to your blog and was totally unaware of EB until now.
    I have two children myself, a 3 year old girl and a 9 month old boy.

    I have to say that Tripp is a very handsome and talented little boy.

    I can't even start to understand the strength you and your son have to be able to go on each day and to still be able to have a smile on your face.

    Now I am not a religious person myself, but I do hope that there would be a miracle that would be a quick cure for EB and especially for Tripp.
    I don't think any child should have to go through this so I hope that there will be a cure soon and that Tripp will be the first one to get it.

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  157. Little more can be said, your strength of will and love are a testimate for all of us to follow and live by. God bless you.

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  158. You are amazing! Tripp is so beautiful and full of life and Love. I have two Autistic children and I can understand some of the challenges you face.
    Thank you for sharing this story.

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  159. Tripp's story touched me. Blessing for the whole family. You are a brave and sweet little boy! :)

    Sincerely Jenni from Finland

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  160. God Bless you, Tripp and you mother. Your story brought tears to my eyes. This would truley be every mothers biggest fear. I have never heard of this type of case before and am aware now. He is such a brave little boy. God gave you Tripp for a reason, because he knew you would take care of him and nurture him like he needed. God bless you, and I will continue to follow your amazing and touching story.

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  161. Im10 and I have prayed for him so many times him and you are amazing

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  162. My son was born with Gastroschisis, which is also very rare but the numbers are slowly increasing over time. Not nearly as rare as EB. I asked God over and over every single day that my son was suffering in the hospital, "Why him?" I know how it feels to have that excruciating ache in your heart for your child. I know how it feels to want more than anything in the world to trade places with them, just to take away their pain. But i will NEVER know your pain. Your strength amazes me. Just READING about Tripp made my heart break and I cried nearly the entire way through your blog. What a sweet little boy. Always remember... God will never give you more than you can handle. He has a plan for you and Tripp and He wouldn't put you through this if it wasn't going to amount to something incredible. Believe that with all of your heart. I'm praying for you two every day. AND, to all of you people making rude and insensitive comments, I pray for you too. You need guidance more than Courtney and Tripp ever will. God bless.

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  163. Courtney - you are an amazing mom. Tripp is very fortunate to have been given to a wonderful mom like you. I pray for Tripp's pain to decrease. He is such a strong little boy, who feeds off of the love you have for him. God Bless you and your amazing little boy.
    - Ellen

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  164. Tripp is adorable, beautiful little boy. Hes so strong, just like his mom. <3
    Like many others, I cried so much reading your blog. Thank you for sharing.
    Best wishes from Finland.

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  165. ((Hugs)) What an amazing little boy and mommy! I look forward to getting to know you guys and catching up on his journey! I just found your blog from a button on another blog. Many prayers coming your way, I have a very strong testimony and faith in Our Loving Heavenly Father! I love the smiley pictures of him, you can really see his sweet little Spirit shining through! What an inspiration. Thank you for sharing his story. Its awesome to see Heavenly Fathers miracles :0)

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  166. I don't have words here... you're a hero... and Tripp is a warrior! Best wishes from Brazil

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  167. reading his story makes my heart break. i m praying for you to have strength to cope with everything you have to do on a daily basis. it breaks my heart knowing you have to see your precious baby boy in so much pain. i pray that the Lord will heal him. My little boy were crying looking at the pics and are praying for him.

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  168. Since stumbling on your blog, I check every day to see if there is any news of how Tripp is doing. You are one amazing mum, your strength, and Tripp's, is beyond words. Thinking of you both!

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  169. This is the 1st time i came on your blog.
    I saw it on one of my Facebook friends page and decided to read it. All i can say is GOD BLESS YOU. God bless you today and everyday for the rest of your life, for being such a strong women. Hes story is amazing. He really is a strong boy! I have a 1 year old, and know how a mothers love is, but yours is much bigger than any other women that has a perfectly healthy child. Because we don't know what is to pray for ur child to have one more day, we don't know what it is to live with ur child in pain, we don't know what to kiss and hug ur baby not knowing if its the last time.. I pray to God that he will give you more and more strength.. I pray to God to take all of his, urs and ur family's pain away, I pray to the lord to take him to heaven with such peace, where he'll be able to rejoice and have no pain, but never forgetting the love his mother gave him even going through such much pain inside every minute of the day !!
    And i thank you, thanks you so much for teaching me a lesson. Teaching me how to be more great-full for having a perfectly healthy 1 year old girl at home... When his time come, rejoice.
    rejoice because he is going to be with the lord and so healthy, rejoice because is going to have no more pain.. rejoice because one day you'll be able to hug him so tight and hell say thank you, for taking care of me so well. cry, but cry tears of happiness because God gave you and angel to take care of for him..


    God Bless You and your family.
    God Bless you Tripp.


    - Camilla Sena.

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  170. God Bless you and your little boy, Tripp. Our Grandson's name is Trip, and he is such a blessing to all around him, just as I am sure your son is too. My heart breaks for you and your son, but rejoice that God has given you and your son the strength to endure all that has come your way. May God grant you continued strength to get through all that is yet to come. God Bless you and your little angel.

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  171. Oh my goodness, this was so hard to read. To watch him go from so healthy looking in the beginning to how hard it must be for you today. Thank you for reminding me to hold my son a little closer, a little tighter tonight. I pray from the deepest part of my heart that God will hold your hand throughout your journey. You are a brave mother, Tripp is a brave boy. My heart goes out to you both.

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  172. May God bless and take care of you both. As well as your Mom. HE has a way of taking our pain away so we can spend the precious time we have enjoying each other. I am sure HE is holding you in his arms and keeping you strong. Tripp sounds like an amazing child and when I get to Heaven I hope I meet him. In my thoughts and prayers.

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  173. what strength that little boy has! praise God for such strength amongst adversity! Our family will pray for you Tripp - Koner is 5 months old and relatively healthy... with some issues here and there... God places us within this world for a greater purpose than we are to know - Courtney - your resilience and love comes to life through your words... i can feel your warmth. inspired

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  174. I was just referred to your blog by a poster on babycenter. I work as a genetic counselor and have never seen a child with EB (thank goodness it is rare, just not rare enough) Your strength is so inspiring and I can't imagine going through so much. I hope you can stay strong during this awful time. Thank you for sharing your story.

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  175. A friend shared your blog with me, and I have been keeping up with your posts. The details may change, but what never changes is how strong of a woman you are, how wonderful a mother you are to Tripp and how great of a relationship you have with God. You are truly an inspiration to all people, especially moms. You will be eternally blessed as will Tripp. I am heartbroken to read your latest update, but just know that prayers for peace, comfort, love and happiness are coming your and Tripp's way from all over the globe. God bless you and little Tripp!

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  176. I just finished reading your story...How very heartbreaking it is to stand by and watch your little precious baby boy be in so much pain. My daughter since she was about 2 years old started breaking out in blisters and red spots that she would scratch to the point of infection. More than one staph infection. I feel bad for her all the time. But Thank God between Itch meds and Tylenol she is pretty much happy. Then I read your story, and my struggles with finding out "why" my child has her problems isn't anything compared to what your dealing with. You have a very handsome little man there, and i am very sorry for what you and your family are going through. God bless each and every one of you!

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  177. Dear Courtney,
    You are so courageous! My heart is breaking for you and your wonderful little boy. It's so unfair! At least Tripp has your love to nourish him through his time on this earth. We will think about you and pray for you!

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  178. Just read the story of your Precious Angel. It is a heartbreaking story, but when I got to the part about his drums, it really got to my heart. We lost our son who also loved the drums. Our son played in his high school band with dreams of playing in the LSU Band. I feel in my heart, that your son will meet my son in the Peace of Heaven and they will play the drums. God Blesses us with his Angels to Love and Care for until he calls them home. With that said, your Story, Strength and Love for your son reminds us of how precious every second is!!! Praying for Tripp, You and his Family!!! Praying for Peace!!!

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  179. I just bawled reading this. Your son is so beautiful.

    God bless you and him.

    Shalom

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  180. I just read the story of your Precious Angel. It is very heartbreaking, but when I got to the part about his drum, it really got to my heart. We lost our son who also played the drums. He played in his high school band with dreams of playing in the LSU Band. I feel in my heart that your lil man will meet my son in the Peace of Heaven and they will play the drums. God Blesses us with his Angels to Love and Care for until he calls them home. WIth that said, your story, strength and Love for your son reminds us of how precious every second is. Praying for Tripp, You and his Family!!! Praying for Peace!!!

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  181. You and Tripp's strength is so incredible and admirable. Your love for your son is one of the most heart felt and genuine things I have ever witnessed.

    "May God hold you in the palm of his hand."

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  182. After reading your story I can say that not only your son is a gift from God, but so are you. It must take a strong and determined woman to do what you have done and continue to do for him. The world needs more devoted people such as yourself. God Bless.

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  183. wow... you are truly amazing... yeah hundreds of people have told you that above me here.. but it is really true... i know every day that i am blessed with two happy healthy children and cannot imagine what you are going through.. i pray for an easy journey to heaven for tripp and that you can go on to write a book about your experience through this all... i know it would help a lot of people regardless of what diseases they are fighting or what. good luck to you and tripp.

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  184. As a mother, my heart aches for you. Thank you for sharing your story. Thank you for your fierce devotion to your son. Thank you for clinging to God's grace. You and your son are in my prayers.

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  185. I just found this blog on BabyCenter a mom posted the link. I have read most of your blog and you are one amazing mother. What you go through I can't imagine your pain of watching your child suffer. I will pray for Tripp and you. God gives you what you can handle and you are doing an amazing job.

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  186. What an amazing mother and woman you are....Tripp is only a few months younger than my son Cooper so reading his story has touched my heart even more because of that, as I'm not sure I could be as brave as you if this was Cooper's story. He is a beautiful boy, and the last photo above is so adorable and so full of emotion....a treasure forever. You will all be in my thoughts for a long, long time x

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  187. Thank you for sharing your story! You and Tripp are amazing People! I Pray God always be with you! I could only wish that I would have a itty bitty tiny amount of strength and courage you both have! God Bless you both!

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  188. I was just informed of your story, and when I saw the pics, my heart broke. I asked the Lord, what is this? I was told this is a form of leprosy in an advanced stage. It's rarely seen today. I was led to say to Courtney, that she is to take Communion, and release him. Tripp will be in perfect health when he goes "Home". We love you in our hearts. God will not allow him to suffer beyond what he can handle.. In God's Love. Peggy Walle, an Intercessor for I Love Liam Lyon.

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  189. May the power of God get you both through and continue to fill your days with little moments that you can hang on to tightly. I wish I could think of more to say. Your story has touched me and will make me cling even tighter to my two little ones (20 mo. and 3 mo.). Praying that you and your angel have a blessed new year and that you are filled with the comfort of God's grace each day.

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  190. I just found your full story. I didn't even know a condition like this was even out there. My heart breaks and fills with love for you all at the same time. I am truly sorry for all the evil things people have said to you. You hold your head up. The lord knew he could count on you to cry get upset but to step up as a true mother would and love and care for your little angel. You are doing the right thing by loving and caring for him until God calls him home! Hugs and prayers

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  191. Our bodies shared the ruin into which sin brought our race. Mortality and corruption took possession of them. They became subject to pain, and weariness, and disease—in every organ and limb. The one drop of poison coming from Adam’s sin has spread itself out and pervaded every part of us. Our flesh, from the cradle to the tomb, is feeble, broken, ready to faint—the cause and the inlet of a thousand sorrows.

    All this shall yet be reversed. Former things shall pass away. This head shall ache no more; these hands and feet shall be weary no more; this flesh shall throb with anguish no more. ‘God Himself shall wipe away all tears from these eyes; and there shall be no more death; neither, sorrow, nor crying, for the former things are passed away.’ ‘He will take these vile bodies of ours and change them into glorious bodies like His own!’

    He who once hung upon the cross, but now sits upon the throne, says, ‘Behold, I make all things new.’ ‘This corruptible shall put on incorruption, and this mortal immortality, and death be swallowed in victory!

    — Horatius Bonar
    The Revelation of Jesus Christ
    From OfFirstImportance.org

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  192. You are such a strong woman and your story is truly amazing. You are absolutely correct when you say Tripp is a gift from God! He is so special and he is here for a reason! His story is devastating but so inspirational. God has a plan for you and Tripp, there's no doubt about that. Tripp is an angel and I am praying for him every day. Stay strong Courtney, Tripp is the luckiest baby to have such an amazing supportive mother who's willing to accept him and the care he needs, and spend every moment with him.

    Ashlie

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  193. Hi Courtney,
    I stumbled across your blog this morning at about 1 am...not even sure how it happened. Please know that you and Tripp, and your mom and all who are helping with this precious child are in my prayers. Your life is filled with an amazing blessing/challenge not many could handle. But it is good to know that God has a far better idea of what we can handle with Him as our strength. Having worked with children who require special care and their families, know what you are doing is a great picture of the love of a Mommy and an example of the love God has for each of us. It takes a special strength only God can give. One of my favorite verses that is on my heart to share is Isaiah 40. The whole chapter is awesome, but vesees 28-31 are so amazing as to the source of strength we have in Him.
    Courtney, I pray that God holds you strong and true each day, knowing that He is sharing Tripp, His precious creation with you. This little guy is part of your now and forever bound in your future. God bless you each moment of every day.

    Nancy

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  194. Wow. I completely admire you're strength, courage, and faith. Sometimes it's really hard when God sends us pain to teach us something. I can't imagine seeing my kids in so much pain. I could barely pull through one ER visit. Any one who reads this knows that you are an extraordinary woman with a very special and loved little boy. Even if he wasn't sick that baby would be loved beyond measure. I hope your faith continues. I love that you call Tripp an Angel. That's all he could be for you to be so strong. Good luck with everything and enjoy every second.

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  195. Courtney, your story has just broken my heart. What a strong baby boy you have and what a wonderful person you are. You're very strong as well. Your baby boy and your family is in my prayers. God bless you!

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  196. Courtney,
    My heart and sould cries for you.After losing 2 pregnancies & 3 Drs telling me I would never have children, I went thru a divorce & later remarried the most amazing man. He came home one day & said, we are going to have a baby & to make a long story short, several months later we found we were pregnant & had a wonderfully healthy pregnancy. Today, 13 yrs. later we have 3 children & have been blessed to have them all healthy. With that being said, I cannot imagine the pain you are going thru, & have cried several times since reading you & tripps story.I know that you get your strength from God & I can tell ur faith in Him is strong. Its so awesome that we have Him to carry us thru these tough times.I know there is nothing I can say to take ur pain away, & I am so sorry. It sounds like Tripp has been truly blessed to have you as a mother as much as you have been blessed to have him as a son. Please know that I am continually praying for you to have the strength you need to handle this. I pray for Tripp to be in peace and free of pain. I pray for you both to comforted in a way only our Lord can comfort you. I am also praying for your mother to have the same strength and comfort that Im praying for you and Tripp, she sounds like an awesome woman and you are blessed to have her. I have also asked my prayer warriors to pray for all 3 of ya'll. May Gods peace be with you all. You are a beautiful, wonderful mother, and you will be blessed abundantly for loving and taking care of your baby as you have. God Bless you all.

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  197. Courtney I just read your blog and you are AMAZING! My prayers are with you and your precious little boy right now. God bless you both!

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