Sturge-Weber syndrome is a congenital disorder that affects the skin, the neurological system, and sometimes the eyes. Few people are familiar with the syndrome that affects about one in every 50,000 live births in the United States.
However, many people may have seen people who have a port wine stain birthmark, usually on the face. But the uneducated person does not know why the birthmark is there. That is why a man who is originally from Maryland wants to bring more awareness to the disease that is affecting his niece.
Al DeCesaris Jr.’s niece, Jenna, is affected by Sturge-Weber syndrome. DeCesaris says he decided to ride a bicycle from ocean to ocean in an effort to bring awareness to the syndrome. He left the Pacific Ocean in California in early September. On Oct. 22, he stopped by Sussex Technical High School to meet students and a little girl in the area who is also affected by Sturge-Weber.
Several Sussex Tech students chose the task of spreading public awareness of Sturge-Weber syndrome for their Leadership Development class because of a little girl from Millsboro, Stella Hastings, who also has Sturge-Weber. The 22-month-old girl is the daughter of Phillip and Brittney Hastings. Brittney is the cousin of a Sussex Tech student, Logan Roe, who was killed in an automobile accident last year.
“The students wanted to help a member of Logan’s family,” said teacher Millie Passwaters. “I think this helps them feel connected to him.”
DeCesaris told students during a luncheon in his honor that people thought he was crazy when he decided to ride a bicycle across the country. He admitted that he has never been athletic and bought his bike only three weeks before he left California.
“I wanted to do something for my niece that was outside the box,” he said. “I wanted to show that when a person puts their mind to something, you can make it happen.”
From time to time, family members and friends, as well as a few strangers, have met DeCesaris on the road and ridden their bikes along with him for a while. He was in touch by telephone every evening with his sister, who planned each day’s route for him.
“My struggles and discomfort while on this trip were nothing compared to the struggles of my niece to be accepted,” said DeCesaris. “Being accepted is vitally important, and awareness brings acceptance.”
DeCesaris' Crossing America for a Cure trip ended that evening at the Atlantic Ocean in Ocean City, Md. But he plans to do another adventure very soon.
“We all have the power to make a difference in someone’s life,” DeCesaris told the students. “You are making a difference in Stella’s life.”
The Sussex Tech students will continue to do fundraisers throughout the year. All proceeds will be donated to the Sturge-Weber Foundation. For more information go to www.sturge-weber.org.