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Fundraiser to aid 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

Taylor Ryan jumps from the swing and hoists herself up to the monkey bars, dangling by one arm. She beckons her dad to fetch a juice box and bickers with her kid sister as the pair play on their backyard swing set.

It's something of a typical day for the East Islip girl except not much has been typical in her 10 years. Since being diagnosed three years ago with a form of histiocytosis -- an extremely rare and potentially fatal blood disease -- Taylor has juggled school and youth soccer games while enduring acute bouts of pain, a host of neurological problems, chemotherapy treatments and hospital stays.

"I love gym," said Taylor, as she showed a visitor her bedroom, which she shares with her sister Samantha, 8. "Once I had to go to the hospital to get my numbers checked, and I told . . . [the nurse] to hurry up -- I wanted to go to gym."

A fundraiser for the athletic and talkative fourth-grader at John F. Kennedy Elementary School -- scheduled for 5 p.m. on June 30 at the East Islip Lanes bowling alley -- seeks to raise money for research into histiocytic disorders, which are caused by an overproduction of white blood cells, leading to organ failure and tumor formation.

Dubbed an "orphan" disease by the medical community because of its rarity, little research exists, and treatment is on a trial-and-error basis, said Dr. Jeffrey M. Lipton, who treats Taylor and is chief of hematology/oncology at Cohen Children's Medical Center in New Hyde Park.

Lipton said between 15 and 20 children are treated annually at Cohen for histiocytic disorders, which primarily afflict children under 10. About 1 in 200,000 children are diagnosed with the disease each year.

"Her life is pretty good," Lipton said of Taylor. "I think she's going to be OK in that regard. I think it's the consequences of her neurological problems that we're uncertain about."

Taylor's symptoms range from severe pain that keeps her off the soccer field, to recent bouts of numbness on her left side and blurry vision, said her mother, Teresa Ryan, 35. She's currently being treated with oral chemotherapy.

"The hardest thing is at night," said Teresa Ryan, a medical biller. "Sometimes at night she's worried that she's not going to wake up. She says, 'Mommy, do you promise I'm going to wake up tomorrow?' I tell her, 'Yes, we're doing everything we can to make you better.' "

Taylor's father, John Ryan, said dealing with her disease and all its ups and downs has been "frustrating."

"The hardest part is watching her go through it all -- so young and innocent -- she's been forced to grow up so soon," said John Ryan, 37, a warehouse manager. "You'd rather be sick yourself than have your child sick."