Louisiana Toddler Who Battled Disease Dies in Mother's Arms

Tripp Roth, who suffered from junctional epidermolysis bullosa, died Saturday.

ByABC News
January 15, 2012, 9:54 AM

Jan. 15, 2012 — -- 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.

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. The Facebook page, "Prayers for Tripp," has more than 38,000 fans. 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 and Facebook page.

"[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."

To learn more about epidermolysis bullosa and to help, go to the http://www.debra.org (DEBRA) or the Puck Fund.