Kernersville boy lives with rare skin disorder

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KERNERSVILLE, N.C. -- Epidermolysis Bullosa is a rare, genetic skin disorder in which even the slightest touch causes severe blistering on the skin.

The disorder is painful and can end up being fatal, but it’s the only life that Jonah Williams knows.

Jonah, a 3-year-old boy from Kernersville, was diagnosed with EB at birth.  While his fragile skin is not hurt by direct pressure, any type of lateral friction causes it to blister and peel.

While Jonah -- like most boys his age -- is full of curiosity and energy, he must stay wrapped in special bandages from his arms to his toes.  His parents, Matt and Patrice Williams, spend more than an hour changing the bandages each day.

“If he didn’t have these, his whole body would look like his face... Basically every day we put his skin on. His top layer of skin,” his parents said.

Changing Jonah’s bandages and gently cleaning his skin is currently the only treatment for the disorder.

EB affects one out of every 50,000 children who are born in the United States, but Jonah’s parents are determined to find a cure.

The first annual "Jogging for Jonah" event, which aims to collect funds toward discovering a cure for EB, will be held Saturday morning at Tanglewood Park in Clemmons.

The 5K Walk/Run starts at 8:30 a.m. and a 1-mile Fun Run starts at 9 a.m.

Pre-registration has already closed, but day-of registration is also possible for $25.  For more information, visit patriceandmattwilliams.blogspot.com.

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