PITTSBURGH — Nearly a decade after a tragic loss, a father is traveling coast-to-coast to raise awareness for a scary disease with no cure.
He teamed up Monday night with a local mom in Pittsburgh whose own child has what doctors call, "the worst disease you've never heard of."
"I started in Jackson Beach, Florida, rode all the way to Seattle-Maple Valley, Washington and I'm currently on my way to upstate New York," Robb Freed said.
Freed is on a cross-country trip, east to west and then back again, 8,000 miles -- all on his bicycle.
While some ride for exercise, Freed rides for therapy.
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"There's no way to describe how to get through life after losing a child. I don't think it's something you are meant to do or trained to do," Freed said.
In 2008, his son Drake E. died from a rare genetic skin condition known as epidermolysis bullosa, where the skin breaks away, exposing the person to infections.
Drake E. lived only 13 months.
But this is more than just a journey to outpace grief. It's a chance to raise awareness, raise money and lift spirits, like for Jocelyn Sicard of Chippewa, Beaver County.
Her son Sebastian is living with EB.
"So many don't know what it's like to go a single day without pain. The more people are aware and doctors can do the research, and find a better way to ease symptoms," Sicard said.
Freed calls it the Big Ride for EB.
People will follow his blog, comment and text him along the way.
About 98 percent of the time, he's traveling by himself on bike trails, paths and roads, but he never really is alone.
The disorder affects one out of every 20,000 births in the United States. That's approximately 200 children a year.
In the more severe cases of EB, life expectancy is 15 to 35 years.
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