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Pedal power brings fight against rare disease to Davidsonville

Al DeCesaris turned his bicycle off Central Avenue and into the parking lot of Davidsonville Elementary School and pedaled about 100 yards before he was greeted by a band of loud, cheering fourth-graders carrying homemade signs and posters.

DeCesaris, 40, an attorney who recently moved from Maryland to California, had spent the previous night with his parents in Riva, so he had had to ride just a few miles to the school for the rally Monday morning. That's far below his average ride of about 70 miles a day since Sept. 8, when he began a trek across the country to raise funds and awareness for Sturge-Weber syndrome.

Jenna Heck, a fourth-grader at Davidsonville and DeCesaris' niece, was born with the rare disease. Her mother, Ida, is DeCesaris' sister.

Sturge-Weber syndrome — or encephalotrigeminal angiomatosis — is a congenital disorder whose cause is not fully understood. According to the website sturge-weber.org, the disease is characterized by neurological abnormalities as well as possible deformities of the eyes and internal organs. Those with the disease often have a congenital "port-wine stain" birthmark on their face. The website notes that each case of the syndrome is unique and that the various symptoms and effects vary from person to person.

Sharon Homan, Jenna's teacher, said her class has been inspired by the coast-to-coast bike ride of DeCesaris, a 1991 graduate of St. Mary's High School in Annapolis.

"[Her classmates] love Jenna. In learning about this [disease] they realize they can make a difference," said Homan, who was also Jenna's third-grade teacher. "They think it is amazing: That is such a hard concept for them, to think of someone riding a bike from California to Ocean City. It really has inspired them."

More than $25,000 had been raised as of early this week, and on Thursday organizers said they were close to a goal of $50,000 as DeCesaris ended his trek in Ocean City after starting in Santa Monica, Calif.

After he was greeted by Jenna and her classmates, DeCesaris addressed first- and fourth-graders at an assembly. While he noted the number of NFL jerseys worn by some of the boys, DeCesaris pointed out that his own red, white and blue bicycle jersey was a way to promote awareness of SWS.

"She is the inspiration behind this," DeCesaris said of his niece.

He said it was "really important" to end the ride in Maryland, since the Hunter Nelson Sturge-Weber Center at the Kennedy Krieger Institute in Baltimore needs money to support its efforts to find a cure for SWS. Earlier this year, the research team at Kennedy Krieger made a breakthrough in tracking the cause of SWS.

Kennedy Krieger's website notes that, according to findings published in the New England Journal of Medicine, researchers at the institute have traced the cause of Sturge-Weber to a genetic mutation. The site notes that SWS occurs in about one in 20,000 births, while the birthmarks are more common.

Jenna is the youngest of four children who have attended Davidsonville Elementary, and many of the students know Ida Heck as a youth travel soccer coach for one of her other daughters.

"It has been just a wonderful thing that my brother would put his life on hold and do this," said Ida Heck, a 1986 St. Mary's High graduate. "It is amazing how much awareness he has raised."

Bob Stanger has known the DeCesaris family since he was 12. His daughter, Chloe, is a first-grader at Davidsonville. Stanger had his bike at the school Monday and was ready to join DeCesaris for the last two days of his coast-to-coast trip.

"I am here to support them and help finish out the journey," said Stanger, a Davidsonville resident.

The two men were scheduled to spend that night in Georgetown, Del., where DeCesaris would speak to students there. There are several children in the Georgetown area who have SWS, according to Ida Heck.

To help Jenna's cause, each Davidsonville student was invited to bring $1 to donate. All funds raised were to be matched by Stanger's company, Stanger Insurance. In addition, retired NFL player Alan Faneca has pledged to match funds throughout the event. Faneca was a first-round draft pick out of Louisiana State University by the Pittsburgh Steelers in 1998, and he played in the NFL through 2010, including stints with the New York Jets and Arizona Cardinals. The former offensive lineman lives in Louisiana, and his daughter, Anabelle, was born with SWS.

Ida Heck said the two families have connected through their shared experience at Kennedy Krieger.

Diane Barry, a special-education teacher at Davidsonville Elementary, is in her third academic year of working with Jenna. She said the girl's classmates bought into the bike ride. "They have been following [DeCesaris'] blog. She told them how to follow his progress," Barry said.

"We want children to think outside of their own world," said Jean Marie Hofstetter, principal at Davidsonville Elementary. "This is a real-life connection."

For more information on DeCesaris' ride, go to crossingamericaforacure.com.

Copyright © 2014, The Baltimore Sun
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