Capital Gazette | Brandi Bottalico | July 13, 2015
Al DeCesaris thought biking across the country sounded more manageable than running. So he bought a bike and three weeks later hit the road.
“Little did I know.”
The Annapolis resident wanted to do something “out of the box” to raise awareness for Sturge-Weber syndrome, a neurological disorder his 11-year-old niece, Jenna Heck, suffers from.
The disorder causes most patients to have port-wine stain (a discoloration of the skin), glaucoma, and seizures and strokes, he said.
His book “Crossing America for a Cure” chronicles his more than 3,000 mile journey in 2013 from Santa Monica, California, to Ocean City and all proceeds from it go toward research to find a cure.
He said while the ride was difficult it was also rewarding.
“Me and my sister are committed to doing this … until there’s a cure to Sturge-Weber syndrome. This is my way of helping my niece and supporting my sister.”
He and his sister, Ida Heck, had been fundraising for years, particularly through Bands on the Bay, an annual concert fundraiser. But he had the idea for the ride and got his sister on board and niece excited.
“I really didn’t know the first thing about cycling,” he said. “After the excitement of the first day … it kind of sunk in.”
DeCesaris said that when he got to the Mohave Desert he realized he was alone and didn’t know how to change gears or about cycling in extreme temperatures. “Those first few days were extremely overwhelming.”
He had always been a runner, but didn’t really know what he was getting himself into when he embarked on his 2013 trip.
Last fall he ran the East Coast from Maine to Florida in the name of raising awareness and funds for his niece’s disorder. He trained for eight or nine months for that adventure.
“I learned so much from the bike ride,” he said. “When I committed to doing the run, I knew I needed to prepare properly.”
He is writing “Running the Coast for a Cure” with the proceeds also going toward research for a cure to Sturge-Weber syndrome (his first book can be found on Amazon).
His favorite stop on the bike ride was at Davidsonville Elementary toward the end of his trip, where he rode into the school his niece attends and talked to her class about his journey and Sturge-Weber syndrome, he said.
That’s when he thinks she recognized exactly what he was doing, he said.
On his trek across the states, he also met other children and families of children affected by the disorder.
“It’s really important for (Jenna) and these other children to let them know there are people fighting for them.”
