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BOY WITH RARE ANEMIA STAGES CARNIVAL FOR RESEARCH

The hand-lettered sign on East and West Road in West Seneca said, simply: Kids Carnival.

What it didn't say was that the carnival that spilled out onto a front lawn on nearby Tracy Lynn Lane was also a fund-raiser, put together by an 11-year old boy who suffers from a rare blood disorder, in order to raise money for research into the disease.

Everything from the dunk tank to the pitching machine to the prizes to be raffled off was donated for the event. And it was the effort of Justin Baumgardner, who has had Diamond Blackfan Anemia since he was about 4, that made it all possible.

"He did it all," Dawn Baumgardner said Friday of her son, a student at Queen of Heaven School in West Seneca. "I think that's what made it so neat. He did it."

"I think its great," Justin said of the carnival, which attracted about 200 people. It took about a month to plan, he said, with the help of what he calls "the committee." Made up of about 15 of Justin's friends, the group did all the work for the carnival, including follow-up visits to the neighborhood moms to check up on donated baked goods.

"I'm glad we helped him for his foundation," said 10-year old Mark Caruana, Justin's friend and vice president of the committee. "It was for a good cause."

The family had not tallied the total amount raised as of last night.

Mrs. Baumgardner said Justin, the oldest of her three children, sees the world differently.

"I honestly feel that because of his illness, he's just so much more sensitive to everything around him," she said. "They go through so much, they look at the world differently. He's so caring and appreciative."

Mrs. Baumgardner said there is no known cause or cure for the disease, a rare anemia of infancy and childhood that results from the failure of bone marrow to produce red blood cells.

There are two courses of treatment for the disease: steroids or blood transfusions. The latter requires being hooked to a pump for five days a week to rid the body of excess iron, she said.

At the time Justin was diagnosed, Mrs. Baumgardner and her husband Peter were told the condition was extremely rare. They have since learned about 300 children in the United States and Canada suffer from the disease. That's why in 1994 they, along with six other parents, formed the Diamond Blackfan Anemia Foundation to help raise money for research into the disease, and lend support for families of patients.

This year, she said, the group held a family meeting in Maine. More than 40 families attended. And while the group brought in experts in the field to speak to the families, it was more than that.

"It was meant to be like a family retreat," she said. And since there were plenty of doctors in attendance who specialize in the disease, it was a chance to go on vacation.

"We don't often get to do that," Peter said.

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