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Junctional Epidermolysis Bullosa

January 15, 2012 by staff 

Junctional Epidermolysis Bullosa, Tripp Roth, 2, was in constant pain with epidermolysis bullosa, a genetic disorder that made his skin fragile and blistered. 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.

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