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Epidermolysis Bullosa: 'Worst Disease You Never Heard Of'

Courtesy Christie Zink(PONCHATOULA, La.) -- The pain never ends for Tripp Roth, a 2-year-old boy who has outlived all medical predictions with a fatal disease called epidermolysis bullosa that has taken his sight and speech, and scarred his body from the inside out.

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 fragile 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."

Copyright 2011 ABC News Radio

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