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Crossing America for Sturge-Weber Syndrome

(Oct. 25, 2013) Nine-year-old Jenna Heck has a port-wine stain birthmark on one side of her face, a characteristic of the rare neurological and skin disorder Sturge-Weber Syndrome.

Her family has been raising money for research and treatment of the disorder over the last eight years, and even though she’s shy, she said what her uncle’s been doing for the past 45 days was “pretty cool.”

Councilmember Margaret Pillas recognizes Al DeCesaris Wednesday at the Greene Turtle in Ocean City at the end of his 3,000-mile journey to bike across America to raise funds for and awareness of Sturge-Weber Syndrome. (Clara Vaughn)

Al DeCesaris Jr. undertook a cross-country bike trip to raise money for and awareness of SWS, ending at the Greene Turtle in Ocean City on Wednesday, Oct. 23 with a celebration among more than 50 family and friends.

His trip, dubbed Crossing America for a Cure, raised around $25,000 for the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute in Baltimore, where Jenna is treated. That total is still growing, and being matched dollar-for-dollar by former Pittsburgh Steeler Alan Faneca, whose daughter Anabelle has SWS.

“We wanted to do something outside the box,” said DeCesaris, who’s helped Jenna’s family raise more than $1 million for SWS research over her lifetime. “We wanted to create an event to spread awareness across the country.”

That’s when the bike came in.

A lawyer by trade, DeCesaris said most of his biking took place during childhood. But when a professional move from Washington, D.C., to California presented itself, it was the “perfect timing,” he said.

“My bike became the vehicle to spread awareness,” he said.

Throughout the 3,000-mile journey from Santa Monica, Calif., to Ocean City, he connected with people in many ways, from strangers who stopped to offer water to other parents of children with SWS.

Through a Facebook group, he met Brittney and Phillip Hastings, of Millsboro, Del., who’s 22-month-old daughter Stella has SWS. The Hastings watched from the finish line in Ocean City.

“It’s humbling,” Brittney Hastings said.

DeCesaris chose to end his ride in Ocean City because of the family’s ties to the area, where they’ve spent summers for more than 30 years.

It’s “just amazing that he did all this for my daughter,” said DeCesaris’ sister, Ida Heck. “It’s been overwhelming to her.”

“It was amazing to have the opportunity to touch the lives of so many people,” DeCesaris said. “It was the hardest thing I’ve ever done in my life, but also the most rewarding.”

He added: “The wheels are already starting to turn about what I can do next.”

Retrace DeCesaris’ journey or make a donation at www.crossingamericaforacure.com. Follow Crossing America for a Cure at the Twitter handle @Crossing4aCure or on Facebook at www.facebook.com/Crossing4ACure.

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