Monday, November 13, 2006

Missoula boy too ill to return from Seattle

By VINCE DEVLIN of the Missoulian

Barry Simon's homecoming was delayed this week when a staph infection landed the Missoula boy back in Children's Hospital in Seattle.

The 12-year-old, who had received the OK from doctors to return home after 14 months in Seattle, will now have to spend Thanksgiving on the coast.

“Stuck again,” said his mother, Cindy Wamsley. “Barry is extremely disappointed. He so wanted to see all his friends.”

It is at least the 40th time Simon has had an infection interrupt his recovery from a bone marrow transplant made necessary by a rare disease called Fanconi anemia, according to his mother. But it reaffirmed her decision - opposed by Barry - to relocate to Seattle permanently after taking her son back to Missoula for a few weeks to see old friends - and to meet some of the new ones he knows only through the letters they've written him since his transplant.

“His sickness is so complicated, and things happen at the drop of a hat,” Wamsley said. To move home to Missoula would have meant frequent 400-mile round trips to Spokane for checkups with specialists, and turning to doctors with little or no experience with Fanconi anemia in times of emergencies.

“But we are coming home for a while,” Wamsley said. “We just don't know when now. We wanted to be there for Thanksgiving, because we have so much to be thankful for.”

Wamsley had already rented a storage shed in Seattle to store the belongings they've accumulated since they arrived in August 2005, and had the phone turned on back at their home in Missoula, when tests earlier this week showed Simon's glucose level had ballooned to four times what it should be.

They had planned to leave Thursday, but it will now be weeks before they can make the trip. Barry's 15-year-old sister Brittany, who stayed with relatives in California during the early months of her brother's hospitalization, has since moved to Seattle and will also return home for a few weeks when Barry's health allows.

Fanconi anemia is a genetic disease caused when both parents carry the same defect in an FA gene. There is a one-in-a-million chance that any one person will carry the defect, making the odds of both parents carrying it astronomical.

Simon attended Missoula's Paxson Elementary School before being diagnosed with the disease.

Reporter Vince Devlin can be reached at (406) 319-2117 or at

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