Rare skin diseases in Infant
Tripp Roth, 2, from Ponchatoula, La., died in his mother’s arms Saturday after battling junctional epidermolysis bullosa (junctional EB).
EB affects one in 50, 000 live births, while junctional EB affects one percent of those with the disease. Babies born with the disorder do not have the protein necessary to hold the outer and inner skin layers together, causing any movement to create friction and blisters.
The blisters can develop anywhere on the skin, particularly in the mouth and around the eyes. Heat can worsen the disease.
Tripp was diagnosed immediately after birth, when doctors spotted blisters on his head and back. There is no cure for junctional EB, and he was not expected to live past a year. Trip died just four months shy of his third birthday.
Due to his condition, he could not even be bathed without powerful sedatives. He also struggled with breastfeeding because of sores in his mouth, so doctors used a feeding tube instead.
Three months after Tripp was born, his mother Courtney Roth, 26, began a blog to raise awareness for EB.
Tripp surpassed expectations, and Roth – who took time off from her job as a nurse to care for him – told ABC News: “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.”
Eventually, however, the disease blinded him, and doctors encouraged Roth to keep him wrapped in blankets to protect his skin.
“My precious angel received his wings today, ” Roth wrote on her blog. “I have had many nightmares about having to write this post.”
Roth received an outpouring of support from more than 39, 000 people who had followed updates on the toddler’s condition.
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