Suffolk to dedicate day to Taylor Ryan, girl with blood disease

Suffolk County will dedicate a day early next year to raise awareness for an extremely rare and potentially fatal blood disease that has stricken a young East Islip girl.

The county Legislature Tuesday adopted a resolution by Legis. Tom Cilmi (R-Bay Shore) that declares Jan. 26 “Langerhans Histiocytosis Day” in Suffolk. Taylor Ryan, 12, who lives in Cilmi’s district, has dealt with the disorder for nearly five years, juggling school and soccer games with repeated chemotherapy treatments and hospital stays.

“Suffolk County has led the way with many important, impactful pieces of legislation -- legislation that has no doubt saved lives,” Cilmi said. “Today we lead the way again in bringing attention to this rare disease, which impacts 1 in 200,000 children. Hopefully that leadership will lead to more public awareness, more accurate diagnoses and more funding for research so that we can save lives.”

Taylor’s family has led fundraisers to benefit research on Langerhans histiocytosis, and said that the  resolution will help bring further awareness. “This much-needed legislation will benefit not only Taylor but many other current fighting this debilitating disease,” said Teresa Ryan, the girl’s mother.

Doctors who treat LCH, as it is known, said it primarily afflicts children younger than 10 and is caused by an overproduction of white blood cells, leading to organ failure and tumors.

“We won’t stop until everyone knows what histiocytosis is,” Teresa Ryan said. “It is our hope that one day we will find a cure.”