Delaware Wave | Elaine Bean | Oct. 29, 2013
OCEAN CITY — On Sept. 8 at the Santa Monica Pier, a big-hearted man with local roots put on his helmet, adjusted his sunglasses and set out on a bike ride across America from the Pacific to the Atlantic.
On Tuesday, 45 days later, Al DeCesaris Jr. arrived at his destination — the Greene Turtle on 116th Street in Ocean City.
Total mileage for the trip: 3,088 miles.
“I took a few wrong turns,” DeCesaris joked.
DeCesaris took the arduous bike ride to raise awareness and funds for Sturge-Weber Syndrome, and to honor his niece, Jenna Heck, 9, of Davidsonville, Md., who was born with the genetic disease.
Ida Heck, Jenna’s mother and DeCesaris’ sister, said they chose the Greene Turtle as the official finish line because of its “significance to our family. Ocean City is our home away from home.”
For the last 36 years, the family has spent its summers at the Braemar Towers on 131st Street.
“The past nine summers since Jenna was born, I have savored the eight-week summer breaks free of doctor appointments,” she said.
Sturge-Weber Syndrome is a neurological disorder resulting from a prenatal genetic mutation. It can result in life-long health complications, such as seizures, glaucoma, strokes, developmental delays and learning disabilities. Some sufferers have a port-wine birthmark on their faces.
DeCesaris’ niece, Jenna, has glaucoma in one eye and port-wine stains on half of her face.
“She’s had seizures ongoing throughout her life, stroke-like episodes. Jenna’s had to reacquire motor skills on one side of her body,” DeCesaris said.
DeCesaris is carrying on a family tradition of philanthropy with his cross-country ride. In 2002, his aunt and uncle, JoAnn and Geaton DeCesaris Jr., donated $3 million to Anne Arundel Medical Center’s Cancer Institute, which named a building after them.
“The idea that he would spend the last 45 days doing something totally selfless for my daughter is amazing,” Heck said. “It really has brought a lot of awareness to a disease not many know about. Even doctors have never hear of it before.”
DeCesaris, 40, is a 1991 graduate of St. Mary’s High School in Annapolis and a lawyer in Redondo Beach, Calif. He chose to bike solo from California to Maryland with no support team backing him up and stayed at camp grounds, roadside motels or with family and friends.
“Along the way, I wanted to connect with people and tell them about Sturge-Weber Syndrome,” he said.
DeCesaris, who said he’s in “great shape,” rode 80 miles a day on average, along interstates and highways west of the Mississippi River and on roads less traveled in the East.
His low point on the trip was last week during a driving rainstorm, when he hunkered down behind a tree, braved howling winds and pitch-black darkness, and heard wild things in the woods behind him.
“I never wanted to quit. That never really crossed my mind, because I’m doing this for my niece, Jenna, and all the others children suffering with Sturge-Weber,” he said.
Funds raised from the ride will be sent to the Hunter Nelson Sturge-Weber Center at the Kennedy Krieger Institute in Baltimore, where Jenna receives care and treatment.
More than 25 years of research is paying off. In May, the center discovered the cause of the disease was a random genetic mutation.
“Now that a cure is within reach, my sister and I decided we needed to do more than what we were doing. We wanted to do a fall event to create more awareness,” DeCesaris said.
The welcome home party at the Turtle included cheering supporters, homemade posters reading “Thanks, Uncle Al” and an official finish line.
Also cheering DeCesaris on was a family from Millsboro who has a daughter with Sturge-Weber Syndrome. Stella Hastings, 22 months old, was born with the genetic disorder and diagnosed two weeks after birth. Her mother, Brittney Hastings, believes Stella is the third documented case of the syndrome in Delaware.
“Right now, thankfully, she has a mild form,” Hastings said.
Before he made his way to Ocean City, DeCesaris made a stopped at Sussex Technical High School to meet with the school’s LDP group, which has taken on a project to help raise awareness and funds for the Sturge-Weber Foundation. Sussex Tech student, Logan Roe, is Stella’s cousin. During the visit, DeCesaris talked about his adventures on the road and answered questions from students, he said.
“The thing I really wanted to convey to the kids was that … if you put your mind to it, you can accomplish anything,” he said.
So far, Stella hasn’t had any seizures or strokes, her mother reported. The facial birthmark gave her glaucoma, which doctors treated with surgery, and they are tracking the progression of her disease with regular MRIs.
“Just raising awareness is the biggest thing,” Hastings said. “We have life-savings medicine on-hand, and a lot of people aren’t equipped with that, to stop seizures when they happen.”
