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Charity event honors East Islip girl with rare disease

Ten-year-old Taylor Ryan, who suffers from a rare

Ten-year-old Taylor Ryan, who suffers from a rare blood disorder, relaxes in her bedroom. (June 11, 2012) Credit: Newsday/John Paraskevas

A fundraiser in honor of an East Islip girl who suffers from a rare blood disease netted $9,036 for medical research, her family said.

The June 30 event at East Islip Lanes bowling alley was held for Taylor Ryan, a 10-year-old girl who was diagnosed three years ago with histiocytosis, which causes an overproduction of white blood cells, leading to organ failure and tumor formation.

More than 400 people attended, Taylor’s mother, Teresa Ryan, said. The event benefited Liam’s Lighthouse Foundation, a nonprofit that benefits histiocytosis research at Cincinnati Children’s Hospital Medical Center. Donations topped the $7,000 raised at a similar event last year for the rare disease, which afflicts one in 200,000 children younger than 10 annually in the United States.

“It was phenomenal,” Teresa Ryan said of the benefit. “We were so excited.”

Although the disease can be fatal, Taylor’s prognosis is promising, according to her doctors. But Taylor has suffered from bouts of pain and neurological problems, and is being treated with oral chemotherapy.

Local businesses pitched in to provide refreshments for the event, including Bohemia-based BBQ King and Ralph’s Italian Ice in East Islip. A face painter donated services, and volunteers from the New York Rangers brought an inflatable hockey rink, a moon bounce and distributed T-shirts, towels and other items emblazoned with Rangers insignia.

“I thanked everybody that night,” said Teresa Ryan, who attended with her husband, John Ryan, and their other daughter, Samantha, 8. “I said to them, ‘Our doctors told us with Taylor, you have to realize it’s not a sprint, it’s a marathon.’ .?.?. It’s been a marathon, but there’s no way we would have gotten so far in the marathon without everyone’s support. They’re like our backbone.”

Above: Ten-year-old Taylor Ryan, who suffers from a rare blood disorder, relaxes in her bedroom. (June 11, 2012)

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