Sussex Technical High School | LDP Students | Oct. 30, 2013

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 patients that 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 an uncle 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 with Sturge-Weber syndrome. Al says that he decided to ride a bicycle from ocean to ocean in an effort to bring awareness to the syndrome. Al left the Pacific Ocean in California in early September. On October 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 also has Sturge-Weber. The 22-month-old little girl is the daughter of Phillip and Brittney Hastings. Brittney is the cousin of a Sussex Tech student who was killed in an automobile accident last year.

“The students wanted to help a member of Logan’s (Roe) family,” explained teacher Millie Passwaters. “I think this helps them feel connected to him.”

Al 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,” Al 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 Al on the road and ridden their bike 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 Al. “Being accepted is vitally important (to the patients), and awareness brings acceptance.”

Al’s Crossing America for a Cure trip ended that evening at the Atlantic Ocean in Ocean City, Maryland. But he plans to do another adventure very soon.

“We all have the power to make a difference in someone’s life,” Al 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.