The Journey Of Hope
SIOUX FALLS, SD- “At first when children are born they don’t look normal per say. They don’t come out looking clean, so we didn’t really think much of it. The lady that delivered Drake E. said, ‘I’ve never seen that before.’ ”
Inspired by his young son, Robb Freed is riding his bike across the country. He’s trying to raise awareness of “Epidermolysis Bullosa,” also known as E.B.
It’s a rare, genetic skin disease that causes blisters throughout the body. In some cases, it can damage deeper levels of skin tissue.
Freed explains,”With E.B you’re missing some protein or collagens that make your skin not wanna have the integrity of the skin you and I have.”
The disease is usually found in young children. Robb’s son Drake E. was born with this condition and died at only 13 months old.
“When he was born, he didn’t have any skin on his fingers and his ear tips were kind of missing a little skin up there,” says Freed.
In memory of his son, Robb is riding his bike “Rowan” over 8,000 miles across the country. He says the journey is strengthening the bond with his son.
“Cycling became my way of almost becoming closer with Drake E. even after he was gone. So I said this is how my relationship with him is going to be now and how I’m going to be able to try to figure life out,” says Freed.
Along the ride, he’s collecting money for a non-profit organization that’s researching a cure for E.B. It’s called. “Debra of America.”
Freed says, “They also provide assistants for families with children who have E.B currently. They could help with bandages, help with wound care supplies. They have an on-call nurse that you can call.”
Robb is touring across the country on his bike and his message is simple. “It’s not about Drake E. It’s not about me. It’s not about…..there’s so many other reasons why this ride has the hope. It’s all about hope. It’s about giving hope to families.”
Robb started his bike tour in Jacksonville, Florida and has been traveling for about five months. He will end his mission in Coney Island, New York sometime in the middle of October. To follow Robb’s tour, check out The Big Ride for E.B.