Robb Freed is on his second cross-country bicycle trip to raise awareness for the skin disorder that took the life of his 13-month-old son. He passed through Crestview last weekend.
CRESTVIEW — Robb Freed passed through Crestview on Saturday during his second cross country bicycle trek to raise awareness for a disorder that took the life of his young son.
Freed’s son, Drake E., was born in August of 2007. A couple weeks later, he was diagnosed with epidermolysis bullosa, a rare skin disorder that causes fragile, blistering skin.
This diagnosis came after doctors found that Drake E. had no skin on his fingers and blisters on his ear. The deadly disorder has no cure or treatment.
“We were told he would live about a year,” Freed said. “Once you get that diagnosis, it’s kind of like all of the air leaves from you.”
Drake E. passed away in September of 2008, 13 months after his birth. His death hit Freed extremely hard.
“For me, it turned into a real angry time, a resentful and difficult time,” Freed said. “I hated the world and everybody in it.”
Freed, said his anger and hate continued for four or five years after his son’s passing until one day he began riding a bicycle.
“It immediately made me feel a little bit different,” Freed said. “Slowly it became something I did every day. Bicycling became my addiction in order to survive and put one foot in front of the other.”
After having a conversation with his friend, Freed decided to ride his bicycle across the country in order to bring awareness to epidermolysis bullosa.
His first cross county trek happened in 2018. In April of this year, he began his second trek which started in Yorktown, Virginia. Freed used the TransAmerica Trail to head out west.
He is now retracing some of his trail on his way towards the Atlantic Ocean, which he hopes to reach in January and complete the second trip.
“I just wanted to be a little louder voice for people in the (epidermolysis bullosa) community,” Freed said. “I’ve met so many families with kids with epidermolysis bullosa. Meeting those other families has inspired me.”
Freed said any money he raises will go to the non-profit organization, Debra of America. The organization funds research for a cure to epidermolysis bullosa and provides support for families affected by it.
“Drake being around for 13 months has inspired many,” Freed said. “We’re just trying to promote the idea of finding a cure someday.”
Freed lives in Glens Falls, New York, when he is not riding across the country.
For more information, visit thebigrideforeb.com or debra.org.