Sussex County Post | Glenn Rolfe | Oct. 24, 2013
GEORGETOWN — Annapolis native Al DeCesaris says he isn’t a super athlete, nor is he a great biker.
He is not at all fond of armadillos, snakes and spiders, particularly tarantulas.
On his Pacific to Atlantic cross-country biking mission to raise awareness and funds for research and treatment of Sturge-Weber Syndrome – a rare, disfiguring disease that has touched his family – the 40-year-old Southern California attorney encountered all of those critters, several detours and many other adventures.
Last Tuesday, he met 22-month-old Stella Hastings, who has a mild form of Sturge-Weber, Stella’s parents Phillip and Brittney Hastings from Millsboro and students at Sussex Tech High School, where there is a relative connection.
“This is our first time meeting him,” said Mrs. Hastings. “It was a great pleasure for us.”
Stella’s mom is the cousin of Logan Roe, a 16-year-old Sussex Tech junior who died last November in a car crash.
“We’re raising awareness, showing awareness,” said Sussex Tech senior Jawon Sivels. “Every Thursday we do a bake sale to raise money and stuff like that.”
The stop at Sussex Tech, highlighted by a warm welcome spurred by the school’s Leadership Development Program, lunch and question and answer session, was the next-to-last last stop in his 3,100-mile “Crossing America for a Cure journey” that began Sept. 8 in Santa Monica, California where he now lives.
After the Sussex Tech visit, Mr. DeCesaris’ journey culminated later that day when he and lifelong friend Bob Stanger, who joined Mr. DeCesaris in Annapolis, wheeled into Ocean City, Md.
“My family has been supporting his cause. When I heard he was doing this I wanted to be a part of it,” said Mr. Stanger. “I am happy to get to share in his awesome accomplishment.”
Ms. Hastings said Sturge-Weber Syndrome is a “progressive neurological condition, essentially a birthmark on the brain. It ranges a broad spectrum, as to how you are affected. Stella’s is thankfully a mild case.”
Mr. DeCesaris’ nine-year-old niece, Jenna Heck, of Davidsonville, Md., who has the genetic disorder, was the impetus for the coast-to-coast adventure.
“My family has helped over raise $1 million in the last eight years and this spring we received great news from the Kennedy Krieger Institute – who we raised the money for – that they have mapped the gene and discovered the genetic cause of Sturge-Weber Syndrome,” said Mr. DeCesaris. “Now the next push is better treatment and maybe one day a cure.
“We’re trying to create more awareness,” Mr. DeCesaris added. “Awareness is so important for these children. Not only does it help advance medical research it helps the Kennedy Krieger Institute get funding.”
Sturge-Weber disease, which affects about 1 in 20,000 babies, occurs in the first trimester and is identified by a facial port-wine stain, a birthmark on the brain and in some cases glaucoma and seizures.
“Essentially the blood vessels don’t form properly and causes port-wine stain. Traditionally it is half of the face,” said Mr. DeCesaris. “The blood calcifies on the brain causing neurological problems.
“The more awareness about the disease the better chance they have to get government funding and grants,” said Mr. DeCesaris. “And also for the children themselves; they have the visual disfigurement and awareness is important for acceptance in society.”
Mr. DeCesaris said he thought “out of the box” in choosing something to raise awareness and funding. He says some people, including family, initially thought he was out of his mind in tackling a cross-country bike hike.
He bought his bike just three weeks before logging the first mile.
Along the way, he eluded armadillos, snakes and tarantulas, was chased by dogs, and survived several spills and a bridge he discovered was for vehicles-only in crossing the mighty Mississippi.
“The trip itself was crazy and fun. If it were easy, everybody would be doing it,” said Mr. DeCesaris. “This something I feel like I’ve been called to do. It shows that if you put your mind to something, anything is possible.”
Photo: In the arms of her father Phillip Hastings, Stella Hastings, a 22-month-old Millsboro girl who has the rare Sturge-Weber Syndrome, greets Annapolis native/Southern California resident Al DeCesaris during his stop Tuesday at Sussex Tech High School. Mr. DeCesaris, whose niece has Sturge-Webeer Syndrome, completed his coast-to-coast “Crossing America for a Cure” journey Tuesday in Ocean City, Md.
