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Toddler Who Battled Painful Skin Disease Dies in Mother's Arms

Posted by on Jan. 15, 2012 at 1:52 PM
  • 17 Replies

 

 

Louisiana Toddler Who Battled Disease Dies in Mother's Arms

PHOTO: Tripp Roth, 2, is in constant pain with epidermolysis bullosa, a genetic disorder that makes his skin fragile and blistering.
 
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The tiny toddler whose struggle against a devastating disease inspired thousands has died.

 

Tripp Roth, who was diagnosed with junctional epidermolysis bullosa at birth, died Saturday in the arms of his mother, Courtney Roth, who had chronicled her life with Tripp in the popular blog, "EBing a Mommy."

 

"He was exactly 2 years and 8 months old," Roth wrote. "It happened within minutes of me picking him up out of bed and rocking him. He took his last peaceful breaths in my arms, in his most favorite spot. My heart literally hurts more than I ever thought was possible."

 

Despite her grief, the Ponchatoula, La., mom asked readers to be grateful that her son is now at peace.

 

"I know he's flying high, pain free, and talking Jesus' ear off," she wrote.

 

In a recent interview, Roth said Tripp was "absolutely gorgeous" when he was born, with just a small blister on his head, a few on his back and deformed fingernails. Doctors diagnosed him immediately with epidermolysis bullosa, a genetic disorder that affects 1 in 50,000. He had the most severe form of EB, junctional epidermolysis bullosa, and was missing a protein the binds one layer of skin to another.

 

Though in early pictures Tripp appeared no different from any other newborn, eventually blisters would cover much of his body and his health deteriorated in other ways. He had to be fitted with a gastronomy tube and then a tracheotomy tube. He endured multiple eye surgeries but, despite the surgeries, Tripp lost his sight after multiple corneal abrasions and tissue growth that ultimately fused his eyelids shut.

 

Courtesy Christie Zink
Tripp Roth, 2, was in constant pain with... View Full Size
PHOTO: Tripp Roth, 2, is in constant pain with epidermolysis bullosa, a genetic disorder that makes his skin fragile and blistering.
Courtesy Christie Zink
Tripp Roth, 2, was in constant pain with epidermolysis bullosa, a genetic disorder that made his skin fragile and blistered.
 

There was no effective treatment for Tripp other than bandages and antibiotics to avoid trauma and infections. Roth, a 26-year old divorcee, gave up her nursing career to care for her son with the help of her mother, Anita Hotard.

 

"We were given a little angel and we have to take care of him," Hotard, 51, said last month. "If he can do it, I can do it ... I don't have near the agony and stress he has."

 

In a blog post last month, Roth wrote that his condition had grown so serious that his days consisted solely of being in bed, then being held in a rocking chair and then going back to bed.

 

It wasn't always that way.

 

"Before he was confined to the rocker, he would play every day, he could drum to the tune of a song like NO OTHER. He would smile, laugh, and melt your heart," Roth wrote.

 

Tripp, she said, astounded his doctors.

 

"He is just amazing. I have always said that from the beginning," Roth told ABCNews.com last month. "I have never been sad around him and I try not to cry around him. We've made it to where he is in the happiest environment possible. His spirit and personality are what keep me going."

 

Roth said she was inspired by her son's strength -- and so were many others.

 

As of last month, Roth's blog, which Roth began three months after Tripp was born, had nearly 2,000 subscribers and 3 million page views. This past summer, hundreds attended a prayer vigil for Tripp in Louisiana and last month, dozens wrote in to ABCNews.com asking that Roth and Tripp be named one of the site's "Heroes of 2011."

 

Kevin Clash, who is the voice of Sesame Street's "Elmo," was so impressed, he wrote a special song for the boy.

 

Roth said last month that she was touched by the outpouring of support.

 

There are "incredible people who pray for Tripp and our family every night," she said. "They say things like, 'He has touched our lives,' "We hug our children a little tighter,' and, 'I have more faith and pray more.'"

 

Roth's readers have been leaving condolence messages on her blog.

 

"[K]now that you and Tripp have touched so many lives in such profound ways," one reader wrote. "Tripp will live on in the hearts and lives that he touched."

 

by on Jan. 15, 2012 at 1:52 PM
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Replies (1-10):
othermom
by on Jan. 15, 2012 at 1:58 PM

That poor family and that poor little boy. That would be so tough to deal with, atleast the little boy is no longer in pain

CoeyG
by on Jan. 15, 2012 at 2:17 PM

RIP Tripp

betsystipo
by on Jan. 15, 2012 at 2:59 PM

He's not in pain anymore....  RIP Tripp

crispysmom
by on Jan. 15, 2012 at 5:36 PM
Rip baby tripp
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maciymommieof3
by on Jan. 16, 2012 at 7:40 AM

 I know...  :(

Quoting othermom:

That poor family and that poor little boy. That would be so tough to deal with, atleast the little boy is no longer in pain

 

snuggiewoogie
by on Jan. 16, 2012 at 8:08 AM

 Very Sad :(

TheJerseyGirl
by on Jan. 16, 2012 at 8:34 AM

 This is where I have a hard time dealing. WHY would a baby be given such a painful short life????? So very sad

Judith3247
by on Jan. 16, 2012 at 8:35 AM
bump!


mamamiajk
by on Jan. 16, 2012 at 10:08 AM

This is truly heartbreaking...

Geria09
by on Jan. 16, 2012 at 10:36 AM

When I read about the suffering/death of children, it always takes a piece of my soul with them...come quickly Jesus, come quickly is my silent prayer.

 

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