SPRINGFIELD, Ill. (WCIA) — One father is traveling cross-country and back to raise awareness about the disease which took his son’s life.
The skin disease, which can be deadly, impacts one in 20,000 babies born. It’s rare, but five months on the road is sparking a new national conversation about it.
Robb Freed started in Florida, rode his bike all the way to Seattle and is now heading home to New York.
He says it hasn’t been easy. Just a week ago, he hit a bump in the road, broke two rips and suffered a collapsed lung. But, it didn’t stop him from completing his trip.
He says the experience has been life-changing. About ten years ago, his son, Drake, died from EB (epidermolysis bullosa) at just 13-months old. He had one of the worst forms of the disease.
It makes skin so thin, it can barely hold together. Any friction or heat can cause deadly infections.
Because the disease is so rare, Freed says he felt alone when Drake died. But, this ride is connecting him with so many going through the same struggle.
He’s using the ride to raise money. So far, he’s raised about $20,000 of his $1 million goal. The money will go to Debra of America – Dystrophic Epidermolysis Bullosa Research; the nation’s only EB organization.
He’s heading directly west after leaving Springfield. Wednesday, he’s looking forward to his stop in Cincinnati, Ohio. It’s children’s hospital has one of the biggest clinics for EB. He’ll finish in his home state of New York.
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