The Capital | Tim Prudente | Oct. 22, 2013
There might have been times when Al DeCesaris didn’t think he could bicycle across America.
But after about 3,000 miles and more than 40 days on the road, “Uncle Al” was to arrive Monday at Davidsonville Elementary School.
There, some fourth-graders already knew about the port-wine birthmark on the face of their classmate, Jenna Heck. To doctors, it signaled the presence of a mutated gene and abnormal blood vessels in the brain.
It’s called Sturge-Weber syndrome. And it prompted DeCesaris to bicycle across the country to raise money and spread awareness of his niece’s syndrome.
To a 9-year-old girl, the syndrome means seizures one Christmas morning and a breakfast of oatmeal and nine pills. It means time home from school, with the shades drawn, waiting for another migraine headache to pass.
To a mother, it means holidays arrive with fear. Excitement triggers Jenna’s seizures, so Christmas gifts are opened slowly, throughout the day. A trip to Walt Disney World had to be arranged so that Jenna could take her required afternoon naps.
In the classroom Monday morning, the children were cheering early for DeCesaris’ arrival. Fourth-graders squirmed in their seats and shook toy noisemakers.
Teachers called for quiet, but even they couldn’t help smiling at the enthusiasm, at the posters promising “You can do it.”
Perhaps DeCesaris doubted that while pedaling into Cincinnati with cars passing inches away, or while enduring the Mojave Desert, or fleeing dogs south of Indianapolis.
A St. Mary’s High School graduate, Class of 1991, DeCesaris began last month in Santa Monica, Calif. He’s an attorney now living in California; he will arrive Tuesday in Ocean City, ending a journey that has raised at least $25,000 for research into Sturge-Weber.
Retired NFL guard Alan Faneca pledged to match the funds raised. Faneca’s daughter also suffers from the syndrome, said Ida Heck, Jenna’s mother.
She’s DeCesaris’s sister and organized the greeting for her brother Monday at the school.
T-shirts with the words “Crossing America for a Cure” were passed out to Jenna’s classmates. Noisemakers were distributed. Posters were drawn. And more than 100 students gathered in the parking lot.
“Happy Riding” read Kaitlyn Darnell’s poster.
“You can do it” promised Jocelyn Gardner’s sign.
“Go Mr. Al!” encouraged Isaac Roh’s poster.
DeCesaris arrived and thanked them. He smiled and hugged Jenna. A teacher cried.
“I probably should have invested in a new seat,” DeCesaris said, laughing. “I had a lot of aches and pains.”
Children groaned when DeCesaris spoke of bicycling through Pittsburgh (the Baltimore Ravens lost Sunday to the Steelers). They cheered when he mentioned how much pizza he ate. They squirmed when he spoke of seeing snakes, tarantulas and armadillos.
“A lot of people just don’t know about (Sturge-Weber syndrome),” he told them. “It’s pretty import to raise awareness.”
About one in 20,000 children are born with the syndrome, according to the Kennedy Krieger Institute in Baltimore.
Researchers there recently identified the mutation that causes the syndrome. It does not run in families.
DeCesaris’ childhood friend, Bob Stanger, is riding with him from Davidsonville to Ocean City. Money raised from the entire ride will go to the institute’s Hunter Nelson Sturge-Weber Center to fund further research.
Jenna’s family also organizes the popular Bands on the Bay fundraiser each spring at Herrington on the Bay in south county. It has raised more than $1 million in the past eight years for research.
DeCesaris told the fourth-graders about his niece’s syndrome. He told them about bicycling across the country.
And he told them that no matter the cause, everyone can do something to help.
Photo: Al DeCesaris stands behind his niece, Jenna Heck, 9, on Monday at Davidsonville Elementary School. Jenna suffers from a rare disease called Sturge-Weber syndrome and DeCesaris bicycled across the country to raise money and spread awareness.
