Tiffany Greene, Building Community
Sturge-Weber Syndrome is a disease most people have never even heard of.
News 13's Tiffany Greene explains how the face of a toddler is drawing in the Melbourne community to help them learn about this rare condition.
"She's funny, very energetic. She's quirky, she's definitely independent," said Amanda Happel, whose daughter was born with Sturge-Weber.
At just two years old, Lola shows off her independence as cute as any bright-eyed baby girl would. From all indications, she's just another toddler busily moving around, but if you look very closely, there's something that makes Lola stand out.
"It's an orphan disease that's identified by the port-wine stain on the face," Happel said.
An orphan disease is one that has not been "adopted" by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications for it.
The reddish birthmark is the best way doctors are able to identify SWS.
"It causes epilepsy, which she has. It can cause glaucoma and it's in her eye -- the actual stain itself. Within time, it starts to calcify and it can shut down that part of the brain. They don't know what causes it. It's nothing hereditary, nothing to prevent it, they're not sure," Happel said.
Determined to help his first granddaughter, Mitch Ribek is helping to get the word out. Each year his employer, Tropical Realty puts on a golf tournament. This year, it is donating all the proceeds to a foundation that specifically researches the disease.
"This is really what it's all about, raising money for Sturge-Weber and bringing acknowledgement to it because nobody knows what is. And because it's an orphan disease, like Amanda said, there's no money for it," Ribak said.
Ribak says some people don't give much thought to spending $100 or $200 on dinner, or going away for the weekend and spending $1,000. But he says that money could be used to change the lives of kids like his granddaughter.
There is still time to sign up for the golf tournament. It will be held this Saturday at Savannahs Golf Course on Merrit Island.
The shotgun start will be at 8:30 a.m. For more information call (321) 749-7786.
To see more Building Community stories, go to News 13 On Demand, Digital Cable Channel 313.
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