Craig boy in need of life-saving transplant

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As school winds down and children's to-do lists grow, Robert Griggs has simple requests from life.

"I want to ride my bike," said Griggs, head bowed, sitting on a family couch.

He would also like to swim, get into a sport or just indulge in any sort of general roughhousing expected from a precocious nine-year-old with a Playstation and an appetite for peanut butter and jelly sandwiches.

"Make it crunchy and toasted like yesterday," he barked Wednesday at mom, Lillian Sherman, who fulfilled the

request.

Robert is sick. A disease restricting most physical activity has his family in a race against time, haggling with health insurers and looking to Moffat County residents for help.

"This campaign we've started is the only thing keeping me sane," said Sherman, 32, who moved with Griggs from Massachusetts to Craig earlier this year.

Sherman this weekend has planned a bake sale and raffle at Craig's City Market and Safeway starting at 10 a.m. -- and established a bank account -- to assist in defraying massive costs associated with a trip to Cincinnati's Children's Hospital Medical Center for Grigg's needed bone marrow transplant.

This, in a nightmare that began with Robert fainting at school April 28.

A battery of tests returned a diagnosis of Fanconi Anemia, an extremely rare inherited anemia that leads to bone marrow failure.

Doctors have assessed Griggs with about 20 percent normal bone marrow function, Sherman said. The disease also leaves patients unable to generate new blood or, eventually, the ability to stop outward bleeding.

A bone marrow transplant is the only long-term cure for the blood defects causing the disease -- a risky step because of the patients' higher sensitivity to radiation and chemotherapy, according to the Fanconi Anemia Research Fund.

"He would be able to reproduce the (marrow) donor's blood," Sherman said.

Sherman's health insurance also notes the risks associated with the procedure, while medical bills could approach $325,000.

"They're fighting coverage because it's so rare and the experimental treatment," she said.

But while insurance options continue to be explored, Sherman said time is critical for her son. A six-unit blood transfusion received after his collapse and a daily diet of pills keep Griggs alive.

Beyond that, choices are a Catch 22: Get the procedure done now or begin treatment with Androgens, or male hormones, which, over several years, could reduce survival chances after a bone marrow transplant.

Sherman credits family, friends and strangers for support in the less-than-month-old crisis.

"Twenty-nine business have already given us gift certificates to raffle off," she said.

Griggs, meanwhile, watches others play on Columbine Apartments' monkey bars in view from the family's apartment.

"I get tired," he said.

Paul Shockley can be reached at 824-7031 or at pshockley@craigdailypress.com

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