Wednesday, November 01, 2006
Barry Simon set to return to Missoula
By VINCE DEVLIN of the Missoulian
Barry Simon is coming home.
“He had more faith than his mother did,” says Cindy Wamsley, whose son has beaten the odds, and beaten back death more than once, since undergoing a bone marrow transplant at Children's Hospital in Seattle more than a year ago for a rare and often fatal disease called Fanconi anemia.
“I left Montana knowing I was going to lose my son,” Wamsley says. “My son left knowing he was going to beat the odds. He just said, ‘Let's get 'er done.' ”
It's been a difficult 14 months for 12-year-old Simon, a former student at Paxson Elementary School, and his mother.
But from the beginning, when his mother asked the Missoulian to solicit cards and letters to Barry from folks back home, western Montanans have played a huge role in his recovery, Wamsley says.
“He's gotten thousands of cards and letters,” she says. “Thousands. I could fill a couple of storage sheds. It's been unbelievable.”
Even though it's been months since the last request went out, Simon still gets 20 to 25 pieces of mail a week from back home.
“A man named Russ sends Barry $5 every week,” Wamsley says. “It's Barry's allowance - and usually the first thing he opens.”
One woman who signs her letters O.G.B. has written faithfully from the start.
“We found out O.G.B. stands for Old Grandma Barbara,” Wamsley says. “She's written every day. Even when she went on vacation, she has not missed a day. And sometimes she'll send boxes of presents and tell him to save them for days when nothing else comes, so he'll have something to open.”
Now, Wamsley wants the people back home who have kept her son's spirits up as the months dragged on, to be able to meet Barry.
“And we want to see all the friends we've never met,” she says.
University of Montana men's basketball coach Wayne Tinkle wrote to Simon, and told him when he did get home, he'd host a party. Mayor John Engen has promised him a tour of the city.
“We're going to have a celebration,” Wamsley says. “Even if we have to do it in a park in a foot of snow, we're going to have a celebration. Barry's going to be 13 on March 30, and I didn't even think he'd see 12. He's going to be 14, 15. He's going to drive. He's going to get married some day. I believe it in my heart.”
The homecoming will only last a few weeks.
Wamsley says she has made the difficult decision to move to Seattle permanently, so that Simon can still be seen by the doctors who have cared for him throughout the past 14 months.
Moving home to Missoula would have meant regular 400-mile roundtrips to Spokane for checkups with new doctors.
“Things happen at the drop of a hat,” Wamsley says. “He's had 25 to 30 infections since the transplant, and one more staph infection could be terrible. If he comes down with a fever or the flu, he's got to be in a hospital immediately, and it's scary to think of putting him in one that doesn't know about Fanconi anemia. Over here, everybody knows Barry, and everybody knows his disease.”
It's a genetic disease that leads to bone marrow failure, also known as aplastic anemia. There's a one-in-a-million chance that any one person will carry the defect in an FA gene, and the only way to get it is for both parents to carry the same defect.
What are the odds of that? Astronomical.
The odds of surviving are better, but not great. According to his mother, 80 percent don't live through the disease or ensuing transplant, and Barry was at death's door more than once in the past 14 months.
Wamsley hopes to bring Barry home this weekend or next. They plan to stay until the first of the year, when they'll move their belongings in Missoula to Seattle.
They're asking for financial help, to put their belongings in Seattle in storage, get home and then make the move back to the coast, one more time.
“Barry wants to go home and stay,” Wamsley says. “He's very sad. We love Montana and it will always be home. But I want him to be where he can receive the best care in the world.”
During the weeks they'll have in Missoula, Barry wants to see his friends and go to school.
“He wants to eat breakfast and lunch every day at the school,” his mother says. “And he wants to meet, and see the faces, of the people who wrote to him.”
“God chose Barry to touch these people, and maybe make them more grateful for their lives and the challenges they face,” Wamsley goes on. “God chose Barry for a purpose.
“And he's not done with him yet.”
Reporter Vince Devlin can be reached at (406) 319-2117 or at email@example.com