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'Best buddy' must travel a long way to find the path to health

August 30, 2006|by BOB MAGINNIS

Though he weighs only 32 pounds and looks more like a 5-year-old than the 8-year-old he really is, Devin Fales is one firecracker of a kid.

It wears me out just to watch him scamper happily around the Red Byrd Restaurant in Keedysville as I talk to his parents.

But his father, Curtis Fales, says that every night at bedtime Devin asks him, "What's going to happen to me?"

The short answer: In the next few months, a lot, and none of it pleasant.

Devin has a rare condition called Fanconi anemia (FA). According to Web site of the University of Minnesota Medical School, it is a rare, inherited disease that causes bone marrow failure.

Devin's mother, Crystal Fales, knows all too well what the disease can do. Her sister died at age 10 of complications from the treatment for the disease, she said.

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Because both parents must carry the gene, the Fales were unaware before Devin was born that he had it. But when they saw the underdeveloped thumb that is a marker, they had him tested.

Then the family began hunting for a doctor who was an FA expert. That wasn't easy, Curtis Fales said, because there are only 800 documented cases in the U.S.

They found Dr. John Wagner at the University of Minnesota Children's Hospital. Sometime next month, the medical staff there will perform a bone marrow transplant.

It's not an in-and-out procedure, according to a statement sent to me by Janet Ziegler, a clinical social worker at the hospital.

First, the family will travel to Minnesota while Devin undergoes a one- to two-week evaluation. Then will come a week of chemotherapy and radiation, after which the donated bone marrow cells will be transplanted.

Devin will be in the hospital for four to six weeks, but even after his discharge, he will have to remain within 30 minutes of the hospital for three or four months, during which time he may have to be re-admitted, based on how well he heals, Ziegler wrote.

Hospital rules also state that a caregiver must remain with him throughout the treatment process.

Fortunately, Curtis Fales' insurance as a technician with the National Institute of Standards and Technology in Gaithersburg, Md., is expected to cover the transplant's $1.5 million cost.

But the family will have to rent a place in Minnesota while Devin is there and deal with the cost of going back and forth to deal with the sale of their home.

Curtis Fales said they must sell because after his wife was forced to quit her job with the Board of Education to care for Devin, they couldn't pay their home equity. They've had $10,000 in medical bills in the last 12 months, he said.

Curtis Fales he said he hoped the bills would total no more than $50,000, but said there were no guarantees.

Even if money weren't an issue, they'd have to sell, he said, because Devin will have to live in a hypoallergenic house, because he will be susceptible to fungus, mold and other tiny critters for a long time.

The Fales each handle the stress in different ways. Devin's mother is quiet, while his father alternates between quick, nervous bursts of speech and rapt attention when Devin rushes up to the table to ask for a quarter or to report that another friend has shown up.

As Devin sprints off, his father said, "It's killing me. He is my best buddy in the whole world."

His anguish is made worse, he said, because even if Devin does well, FA patients are susceptible to other medical problems for the rest of their lives. Devin is close by when he says this, but the boy shows no signs that its impact registers with him.

He is, from all outward signs, a happy-go-lucky child. That fact was attested to by his friend, Don Shumaker, president of First Hose Company of Boonsboro, where Curtis Fales has been a long-time volunteer firefighter.

The fire company has tried to help, Shumaker said, proudly pointing to his latest project.

The company has purchased a New York City firefighters' helmet emblazoned with No. 8 and Cal Ripken Jr.'s name. Shumaker said the fire company is making arrangements to have Ripken sign it, after which it will be offered on the eBay Internet auction site.

With Ripken certain to be on the Baseball Hall of Fame ballot in 2007, it could be quite a collectible.

If you have healthy children and don't have to spend this winter watching them suffer in a place where the outside temperature can reach 30 below zero, consider helping the Fales family get through the next year.

To do that, you may go to any branch of Hagerstown Trust and contribute to the First Hose of Boonsboro/Devin Fales Benefit Account, No. 155007179.

Please help. Everyone needs a healthy best buddy.

Bob Maginnis is editorial page editor of The Herald-Mail newspapers.

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