Just hoping and praying to somehow help, JoAnn. Heard about your story. We're praying for you guys. Shes such a sweetheart. She has a youtube page. Here is her webpage. Thought knowing someone whos older with EB might bring you comfort. 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? All the joy and love that she brings to life makes it all beyond "worth it.
So, I guess my question is this: What causes the sores on his face i. 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! 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 wish you and your family the best, especially that little beautiful angel of yours. God bless him.
I am blessed beyond telling by your beautiful story and precious baby Tripp! Thank you for sharing with us! I just read your story in Tangi Lifestyles and i cried tears of heartache and tears of joy 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. I am so impressed by your strength, your story is so inspiring. Thank you for sharing it with us. Just watched your videos at the Youtube channel. It's unbelievable Seriously, you should do something about that! 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. 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 :. There is nothing I can say or do, except pray. Your story really touched me. I have two great-grand children born in 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. 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 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 I hope and pray as the days and weeks go by Tripp starts to feel better Much love, Angel and Baleigh. 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. 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!
Cecile Jo. 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.
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. 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 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 I don't know you or your family but I find myself both sobbing and smiling while reading this.
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. 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. 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. You are an extraordinary woman! You truly were blessed with an angel! You and that precious baby will be in my prayers. 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. 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. 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. You are doing great. One day at a time with Jesus. 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. 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. 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:. 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!! I will continue to follow Tripp's story! God Bless you!! 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. I stumbled across your Facebook page which led me here Courtney, I have only known of Tripp's story for a few weeks now.
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. 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! 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! Bless your hearts. And Courtney, your story is amazing. How is Tripp doing? And any new developments with Randy?
Keep up the good work momma, and you too little Tripp! I send my love and prayer to your home. 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. 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.
Courtney, thank you for finding time and strength to blog about your life and your precious child! My heart is breaking for you two! 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!.. 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!
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. 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. 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. 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! 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. 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 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. Im a new reader to your blogs and I will continue to pray for you and your son. My daughter was Born May 2, 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:! 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. Trust in Him always for He is Able!
Tripp and Courtney have changed my life forever. I cannot begin to imagine the hurt she is feeling. Tripp, play your drums along with Heaven's lullabies, and send your Mommy strength from above Posted by Dena January 17, Such a strong lil drummer boy, with so many that love him. Tripp is now flying high with the angels, playing his drum for all to hear.
Until we all meet again one day, Rest in Peace sweet drummer boy. Posted by Leslie January 17, To the Roth and Hotard Family: I am deeply saddened by the loss of your son and grandson. I never met him, but I know from keeping up with him through the blogs, that he was a special little boy. He touched people in so many ways that his memory will live on forever. Just remember that he is in Heaven now and completely pain free and doing everything a little boy with his spirit was destined to do.
My prayers are with you. May God comfort you in the days to come. Just wanted to tell u that my family and i will be praying for your family in your time of loss..
Posted by amanda January 17, Posted by Kimberly January 17, My thoughts adn prayers are with you. Tripp was an angel here on eath and a true inspiration. He will never be forgotten. Posted by bee January 17, We are so sorry for your loss. We will keep you and your family in our prayers. Tripp may have not known all of us but he touched all of our lives in some way. Take care. Dear Ones, Tripp was and is forever an inspiration. Thank you for having him as he was a delight to behold on Godvine.
We feel crushed for your loss but know we will see him again whole and healthy in heaven some sweet day. God's Son died too and He knows your pain. Blessings to all who mourn Tripp. I pray that you and your entire family find comfort and peace in the days and weeks ahead. You have touched so many people that you'll probably never meet-like me!
You are an angel here on earth. Courtney, I want to send my deepest sympathies for your loss of your angel, Tripp. Please know that you are an amazing mother and he is now with you forever, pain-free. Our family will be praying for your healing. Rest in peace Tripp, you are a hero to us all. Praying that you can find peace in knowing that he is in no more pain. He can hold his Elmo now and watch over his mommy now. Thank you Courtney for letting us into his life by sharing his story.
Rest in Peace Little Man. Posted by Daphne Dlaune January 17, I believe God is holding Tripp now and he is laughing and smiling and sending his love your way. God be with all of you. I fell in love with Tripp the minute I found his story - how could one not love him?
He was one amazing little boy. He reminded me that every day is a gift and to live life to the fullest - no matter what our circumstances, there is joy to be found. He also inspired me to be part of the cure and I will do everything I can to help.
You will continue to be in my prayers and I know you find comfort in knowing you'll see him again one day. I myself am looking forward to meeting this brave little soul one day!
What a blessing he was and what a blessing YOU were to him. May God give you the love and strength to see you through this difficult time. My love and prayers goes out to you all. God bless you baby Tripp.
You have touched my heart and soul Courtney and family, You don't know me and we'll most likely never meet but my prayers are with you and your beautiful baby boy Tripp I am so sorry for your loss but I am very happy Tripp had such wonderful parents. He was a fighter and a true inspiration for all of us! Both of you are in my prayers. May the peace of the Lord be with you and your family. I will continue to pray that GOD will comfort you in your time of sorrow. Posted by Darlene Tallo - Friend January 17, To Tripp and Courtney- you have touched my life forever and you will never be forgotten from my prayers.
Posted by amy - TX January 17, Courtney you were an amazing Mother to your little boy, and just know that Tripp will always be with you in heart and spirt. Tripp will guide you during this sad time. He was a very special little boy and now he will be a very special little angel. Tripp is now at peace.
My prayers are with you and the entire family. Posted by Margaret Raziano January 17, I pray for comfort for you and your family! May god be with you all! Praying for your family. Tripp is a happy, healthy toddler now; may that bring you a little comfort in your time of mourning.
Posted by Rene Hammons January 17, I'm so sorry for what you are going through, but so happy that Tripp is with Jesus and pain free. Praying for you. Posted by Dena - WI January 17, Posted by c January 17, To the family of Tripp Roth: You have my deepest sympathy. I cannot imagine the grief you feel at losing one so young, but please know that you will be in my thoughts and prayers.
January 17, Our sincere thoughts and prayers are with each one of you during this most difficult time. May God continue to hold each one of you even more closer in the days ahead. Thank you for sharing Tripp with all of us, he touched so many people. I have never had the pleasure of meeting Tripp, but I do know a personal family member and like thousands have followed Tripp's life.
He is a Blessed Gift from God and will live in the memory and thoughts of sooo many. Randy, even though we have never met, I feel as though I know you through your family!
You have alwasy been and will always be a wonderful father and best friend to Tripp! Don't ever doubt that he knew that!!! There are no words of sorrow great enough to ease your pain. I will be praying for strength as you go through the recent days ahead!
Posted by Winter Weldon January 17, Randy and Family, I imagine there is no pain more far-reaching and deeper than losing a child. My heart and prayers go out to you at this most difficult time. Mike G. My sincere condolences on your loss of little "Tripp". May God watch over and comfort all of you during this time. Tripp you will forever be in my heart. You have touched my life and changed everything about it. Courtney please have some comfort knowing that Tripp is in the street of gold playing and not hurting anymore.
Much love to all the family. Prayers from South Dakota. I have never met you Courtney, but my heart breaks for you and your entire family as you endure the loss of your precious Tripp. Tripp is an inspiration and will live on in the hearts of the thousands of people he touched. Posted by Lindsay - yankton, SD - friend January 17, My prayers go out to you guys!
You have endured so much yet every picture I see there is a smile on little Tripp's face! May God help you thru these tough times! God bless you Tripp, and your family. You are in heaven now playing the drums with the angels.
My your family find peace. Posted by tabatha stahl - none January 17, There are no words. Courtney, please know that Tripp has changed the world and that he will always be with you as your angel, just as you were his angel. My heart breaks for your loss on this earth. Loving thoughts and prayers to you and your family. May you find peace and comfort in the days ahead. Posted by Sandy January 17, When someone we love becomes a memory , that memory becomes a treasure.
Your precious boy was a gift and will become a treasure to more people than you know. You will remain in my thought and prayers. Denise and I extend our deepest sadness for the loss of Tripp. We are remembering and keeping Tripp and his families in our prayers. Your lil angel is watching over mommy now until the day when you meet again. God knew exactly who to chose when He chose you to be Tripp's mother, Courtney. You have a heart of gold that many, like myself, can learn from.
Tripp may have only been on this earth a short time, but what a purpose he served, as did his mommy. I do not think the first one posted. Posted by Denise Pharries - Follower January 17, May God be with you and your family and friends through every step of this grief. Tripp is drumming, playing, running, and having the time of his life in Heaven.
God bless you all. Sending prayers and peace to you and your family. Tripp is a Angel and is Smiling down on yy life you all. He has changed my life as with many around the world. Your son was sent from heaven to capture and win souls for GOD and he did his job very well. Thank you for sharing your sons life with the world as he brought me back to GOD. You should be very proud of him. I will be forever greatful for what you and Tripp has done for me. Tripp lives on in the lives of many around the world.
Love the Pitre Family. Tripp changed my life forever, for him I'm grateful. Courtney, May God surround you with His love and spirit. Tripp, always in our hearts!
Posted by Brittany H. Your beautiful baby has touched the lives of so many. You should be very proud of the angel you were given! Always praying for you and your family.
You will forever be in our hearts! Posted by Karen Hano January 17, Courtney, I just wanted to take a moment to tell you how deeply sorry I am for your loss.
I have shared your story and your blog with my 8 year old daughter. We were both heart broken when we saw that he had passed. Please know that you and Tripp have been in our thoughts and prayers. Posted by Tracy Geiger January 17, I have been so blessed by learning about you and your sweet, beautiful baby Tripp.
The two of you together is proof that God exists because this precious baby boy was paired up with such an extrodinary, incredible mommy. I hurt so much for you and your family, and yet am so happy that Tripp is pain free and in Jesus's arms rocking and drumming tonight. I also have to express how his God given percussion talent blesses me so much. I just want to watch his sweet videos again and again.
Thank you for sharing your son's life with us on your blog. My deepest condolences go out to you. I was praying for peace for Tripp, and I will pray for peace for you now. Posted by Christy S. My deepest and sincerest condolences to you and your family. You have been, and will continue to be, in my prayers.
Posted by Lisa Bowen - Member of the community January 17, Thoughts and prayers sent your way. I had not heard of EB before I found your blog. Thank you for bringing light to this disease. God Bless you. Courtney, you are an angel on earth and Tripp is watching over you, no longer in pain.
Thank you for sharing him with us. He was truly a special boy. Posted by Lisa westmoreland January 17, Courtney and family I send my condolences. I have been following your journey for months now and I'm so sorry it had to end so soon.
You are an amazing mother and Tripp will always be with you and I am sure he will never leave your side. Thank you for showing me that there are still good people out there. I will pray that god be with you in this hard time. Posted by Prayers from Pittsburgh January 17, Courtney, I have followed your blog for a while now, and I just feel so much hurt for you.
What a glorious gift heaven was given when Tripp was called home. Posted by Elissa - TX January 17, Dear Courtney, You and your family are in my prayers,as you have been since I learned about Trip.
What an absolutely amazing little man!! I am so sorry for your loss,but God knew what he was doing when he made you Tripps mom,you did an awesome job!! May you continue to fine comfort and peace in Gods love!
Posted by amy legere January 17, Courtney you are an amazing mother and Tripp will never be forgotten. My heart goes out to you and your family. Posted by lynda January 17, I am going to miss my lil' drummer boy so much. Thank you Tripp for blessing all of our lives My prayers are with your family.
Courtney, May God comfort you and wrap His loving arms around you! Love you! We will always be here for you. Louis, MO - Carboline January 17, May God continue to give your family strength through this difficult time. Tripp was a blessing to this world, and your family was truly a blessing to him.
My heart and prayers are with each of you. My heart breaks for your mother and family. While I'm sad you've left the earth, I know you are in a place where there is no EB. Now you can do all the things you never could do here. What you did do here was amazing. You've left this world a better place than the day you came into it.
You leave behind thousands of people changed for the better. You and your brave mommy have also brought great awareness for those suffering like you.
Thank you. Thank you, brave little drummer boy. Courtney, I have followed your story for months. We know that Tripp is no longer in pain and just like you posted last night, he is running and playing, and talking to God.
But I know it is painful for you and your family. I weep for all of you. You are a wonderful mother and I will never ever forget you and your "Little Man". With God's love, Candy J. Posted by Candy J. Fletcher - Colfax, LA - on line friend January 17, I am so sorry for your great loss. I know Tripp is in a wonderful place and is finally at peace. Thank you for sharing his story with us.
Tripp is truely a hero. You were the best mom he could have asked for. I know you will miss him greatly, but will find comfort in knowing he will be your angel watching over you until you are with him again. My love and prayers go out to you and your family. I pray for comfort for you all. Tripp will always be remembered by thousands of people who never even met him.
He is a hero, and so is his family who loved him so much. Posted by Julie Kempton - Friend January 17, I have followed you journey with you Angel and you are an amazing person.
I have the utmost respect for you and hope that you find some Peace in knowing how many lives your story has touched. I pray that your memories will get you thru this. I will continue to keep you in my prayers. Diane Romeo. My thoughts and prayers are with you Courtney, Randal, and family.
Posted by Judy January 17, It's never easy saying goodbye to someone we love, especially when it is a child as sweet and innocent as Tripp. But hearing he has gotten his angel wings brings peace, knowing he is finally free of the terrible pain that has burdened him since birth. I cannot even begin to imagine the emptiness you feel right now Courtney, but I hope it brings comfort to you and your family knowing that Tripp has been such a blessing, touching lives, to people all around the world.
Out of all the women in the world, God chose you to take care of this brave little boy because he knew you would love him unconditionally, and behind each smile that love showed. You took care of him, so, so courageously, setting a perfect example for all parents. In sharing his life, your story, his journey here on earth has not been in vain. You shared so willingly, so unselfishly, and in doing so you have helped so many EB families.
Rest in the knowledge that he is healed now, and you will see him again someday. We will continue to keep you and your family in our thoughts and prayers. Rest in peace little man, and keep playing those drums.
I hope the angels enjoy it just as much as we all did. Love you and miss you always. Most children his age are fearlessly bounding through the milestones, learning to walk, talk — and cause as much havoc as possible.
But for two-year-old Tripp Roth, an excruciating skin disorder that causes his skin to blister and scar at the lightest of touches confines him to a life inside, wrapped in bandages. Scroll down for video. Trooper: Two-year-old Tripp Roth suffers from a severe skin disorder, junctional epidermolysis bullosa.
The disease, which affects one in 50, people, means his skin is easily blistered and scarred by touch and heat. Dependent: Tripp's mother Courtney Roth, pictured, left her job as a nurse to care for her son full time. It has claimed his sight and speech — and means he cannot even bathe without taking powerful sedatives.
Due to the life-long genetic disorder, which affects 1 in 50, people, his skin is missing a protein that binds one layer to another. It means any friction can cause sores and scars across his skin, his eyelids, the upper esophagus and inside his mouth. With no cure, doctors can only suggest his mother keeps him wrapped in bandages to protect his delicate skin. Severe: Tripp, who lost his sight because of the scars on his eyelids, breathes with the help of a trachea tube. Early days: When Tripp was born, a few blisters on his body alerted doctors to the disease.
He is now wrapped in bandages daily to ensure his skin does not come into contact with any heat or touch that could damage it. But Tripp, who has not been outside for a year, has outlived all medical predictions. Epidermolysis bullosa is a severe genetic skin disorder that affects one in 50, live births.
Skin is made up of two layers; the outer layer is the epidermis and the inner layer is the dermis. In healthy skin, proteins hold the two layers together so they do not move separately.
In those born with EB, the layers do not have the protein that holds them together. It means that any movement that creates friction between the two layers creates blisters.
Tripp suffers from junctional EB, which affects around one per cent of those with the disease. He was not expected to live past a year; many babies with the condition die after developing infections or from breathing problems after blisters develop in the respiratory tract. Blisters can develop anywhere on the skin, and the mouth and eyes are particularly susceptible to the sores.
His spirit and personality are what keep me going. As of last month, Roth's blog, which Roth began three months after Tripp was born, had nearly 2, subscribers and 3 million page views. The Facebook page, " Prayers for Tripp ," has more than 38, fans. Kevin Clash, who is the voice of Sesame Street's "Elmo," was so impressed, he wrote a special song for the boy. There are "incredible people who pray for Tripp and our family every night," she said.
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