Peddle On: Man Bikes 3K Miles For Rare Disease Awareness - 47 ABC - Delmarva's Choice

Peddle On: Man Bikes 3K Miles For Rare Disease Awareness

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GEORGETOWN, Del. - With an adorable handshake, Stella Hastings and Al DeCesaris meet for the first time.

But these strangers have a lot in common. DeCesaris is raising awareness about Sturge-Weber Syndrome. The little girl, barely two-years-old is living with this condition.

Brittney Hastings, her mother, says she didn't know "until a few hours after birth" that her daughter had Sturge-Weber.
 
"Within hours, I was on my cell phone and researching and trying to educate myself," said Stella's father Phillip Hastings.
 
Stella was born with a port wine facial birthmark, a tell-tale characteristic of SWS, a congenital disorder. This playful toddler is at risk for debilitating seizures.
 
But, "thankfully, she doesn't have any special needs right now," says Brittney.

Phillip Hastings says he worries about her future and her adult life.

"Is she going to be able to drive? Have a job? Is she going to be able to get married some day?" Phillip questioned.

It's why Brittney and Phillip, like DeCesaris, who biked across America for his niece have teamed up with Sussex Tech High School students.
 
"Us working together will help us spread awareness about Sturge-Weber," said Erica Reese, a student at Sussex Tech.

"There's still great people in the world," said Brittney Hastings. "[Stella] makes us thankful for each day."
 
Brittney and Phillip say they are happy that Stella is able to live as normal a life as possible and so farm she hasn't had any seizures. DeCesaris arrived at the Original Green Turtle in Ocean City just before 6 PM. He's now resting and celebrating with family, who came in for this momentous event.

DeCesaris says he will not be biking back to California, instead making the more than 3,000 mile trip back home in a car.
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