Girl, 9, upbeat despite rare blood disease

Taylor Ryan is a typical 9-year-old now - smiling, upbeat, finding comfort in her mother's arms.

The East Islip girl, diagnosed with a rare blood disease two years ago, has survived the worst of her ordeal. Now she's looking forward to a normal life, free of weekly hospital visits.

She's been living with histiocytosis, an excess of white blood cells called histiocytes that normally aid the immune system but can also join together to attack the body.

Thursday, at Cohen Children's Medical Center in New Hyde Park, where Taylor continues chemotherapy treatment, she was joined by her mother, Teresa Ryan, and her attending physician, who gave an update on the grade schooler's condition and urged more funding and attention for the debilitating illness.

"It's hard to hear when you're told your child is sick," Teresa Ryan said at a news conference with hematology and oncology specialist Dr. Sarah Vaiselbuh. "If more people saw what these kids go through, more attention would be brought to the disease."

As a toddler, Taylor seemed perfectly healthy. Then came the high fevers and ear infections.

In 2006, she was admitted to the New Hyde Park hospital, where doctors found she was suffering from a form of diabetes that caused her kidneys to malfunction and begin producing excess blood cells.

Her doctors, though, were puzzled over what caused the diabetes. They put her through a series of MRIs that spanned several years until they discovered an important clue: a lesion on the left side of her brain.

Diagnosed with histiocytosis, the girl started chemotherapy last summer.

Vaiselbuh, Taylor's doctor, said there are about a dozen new cases of the blood disease identified each year worldwide.

Teresa Ryan said she's hopeful her daughter will make a full recovery. "One in 10 Americans are suffering from a rare disease," she said. "Just because it's rare doesn't mean these children who are suffering don't matter."

Because the disease is rare, little money has been raised to date for needed studies, Teresa Ryan said, adding that that needs to change. "I don't want people to sit back while kids go through this," she said.

Vaiselbuh said Taylor was responding well to treatment and her prognosis is "very good."

Taylor, who has six months of chemotherapy to go, is optimistic. "I have to go to the hospital every time I have a fever," she said, "but even when I feel bad, I always try to smile."

HISTIOCYTOSIS: AN OVERVIEW

• What it is: A rare blood disorder affecting primarily children; occurs when white blood cells called histiocytes cluster and attack the body. Skin, bones, gastrointestinal system and major organs are at risk.

• Symptoms: Can include scaly, waxy rashes, lesions, vomiting, abdominal pain and dehydration.

• Treatment: Can involve chemotherapy, radiation, steroids, bone marrow transplants.

• Prognosis: Overall survival rate is about 80 percent.

To learn more, visit www.histio.org

SOURCES: Baylor College of Medicine; Histiocytosis Association of America