Epidermolysis Bullosa: Worst Disease You Never Heard Of

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 pain never ends for Tripp Roth, a 2-year-old boy who has outlived all medical predictions with a fatal disease that has taken his sight, speech, and scars his body from the inside out; the severest form of EB, junctional epidermolysis bullosa.

The tiny toddler, who has blisters on his face and hands, has not been outside for a full year. He spends his life swaddled in bandages, being rocked in the arms of his mother, Courtney Roth, or his grandmothers.

Tripp breathes with the help of a trachea tube and requires sedatives so that his caregivers can bathe him, an excruciating process that takes three hours.

Infections and trips to the hospital are never-ending and there is no cure for the disease. The thousands of supporters who have rallied behind the family call it "the worst disease you never heard of."

Born with epidermolysis bullosa, a genetic disorder that affects 1 in 50,000, Tripp is missing skin on much of his body and what skin he does have is as fragile as a butterfly, and can easily erode. He is missing a protein that binds one layer of skin to another.

The disease is a spectrum of inherited skin disorders, whose hallmark is a blistering response to minor injuries, heat or even rubbing or scratching. It affects not only the skin, but anywhere in the body where tissues are held together more firmly: the eyelids, the upper esophagus, inside of the mouth and the genital-rectal area.

There is no effective treatment, other than bandages and antibiotics to avoid trauma and infections.

But Tripp's mother, who gave up a nursing career after Tripp's birth, said she derives inspiration from the remarkable little boy, who just won't stop fighting. Initially, doctors said he wouldn't live beyond a year.

"He certainly astounded his doctors," said Roth, a 26-year old divorcee from Ponchatoula, La.

"He is just amazing. I have always said that from the beginning," she said. "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."

But Roth, herself, has also been an inspiration to others. She recently was named one of ABC's "Personal Heroes of 2011."

She was selected because of the overwhelming number of letters and emails from supporters around the country, many of whom had never met Roth, but read her blog, "EB'ing a Mommy" and a Facebook page, "Prayer's for Tripp."

The blog, which Roth began three months after Tripp was born, has nearly 2,000 subscribers and 3 million page views; the Facebook page already has 30,000 members.

"I started my own Facebook page, but when it reached the friend limit of 5,000, a lady from the community started one for him," Roth said.

"It's also just amazing, the 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 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, but Roth had no idea what the disease meant.

"Then I went online and saw a completely terrifying picture," she said.

Tripp had trouble breastfeeding because of the sores in his mouth and eventually needed a feeding tube. He's still tiny, as well, weighing only 27 pounds in his bandages.

"It's so hard," Roth said. "Obviously he can't speak. He can communicate well, but we have a hard time and from what I can see in his mannerisms, he definitely looks in pain all the time."

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