Wednesday, June 20, 2007

Here is some news on that boy Barry who was transplanted in Seattle. I talked to his mom a few times when we got him that computer for his birthday. I was wondering what happened to him. Reading this it is clear that it has been incredibly hard post-transplant, and he has more of the same ahead. But he is alive and that is what is important.

I will call his mom and say hello. I was just saying how hard it must be to have problems on top of having Fanconi anemia. It sounds like they've had more than their share.

Boy fighting rare disease making stop back in town

By VINCE DEVLIN of the Missoulian

It's not the homecoming he's dreamed of, but if Barry Simon has learned anything since he left Missoula in August 2005 as a very sick 11-year-old, it's to roll with the punches.

And so his first visit home in nearly two years after undergoing a bone marrow transplant in Seattle may not be the festive occasion he or his mother, Cindy Wamsley, had envisioned. It's a hastily arranged, last-minute trip made necessary by sewage that backed up in their Missoula apartment, damaging their belongings.

“The irony is he's coming home but he can't go home, because he doesn't have a home to go to,” Wamsley says. “It's not the homecoming I fantasized he'd have, not even close.”

There's been no time to set up anything with Mayor John Engen, who once promised Simon a tour of the city when he got back, or University of Montana basketball coach Wayne Tinkle, who had offered to throw Simon a welcome-home party. School's out, and Wamsley has no way to contact any of her son's friends from his Paxson School days.

When they deplane at Minuteman Aviation at Missoula International Airport on Wednesday between 1 and 2 p.m., the only person they expect to see is “O.G.B.” - she calls herself “Old Grandma Barbara,” and has faithfully written to Simon every day since he left for Seattle - who has offered to put the family up for a couple of nights during their five-day stay.

Wamsley, Barry and his sister Brittany will fly to Missoula and back to Seattle courtesy of Angel Flight West, a group of private pilots who donate their time, airplanes and fuel to transport people for medical and other compelling needs.

They'll be flying a young teenager - Simon turned 13 in March - who is still very sick, and in need of another transplant this fall, according to his mother. But he's feeling well enough right now to make the trip, unlike last fall, when a planned Thanksgiving homecoming fell through when Simon was readmitted to Children's Hospital with a staph infection.

Simon's story caught the attention of many western Montanans after he was diagnosed with Fanconi anemia, a rare genetic disease that leads to bone marrow failure.

Maybe it was his family background - Cindy is a former methamphetamine addict who quit, cold turkey, by putting herself and her two children on a bus from California to Missoula, where she knew no one - and knew no one who could supply her.

She rebuilt her life and her family's, only to see her son go from an active 10-year-old to an 11-year-old who had trouble finding the energy to ride a bicycle. Doctors eventually diagnosed Simon with the often fatal disease.

And maybe it was the nature of the disease itself. There's a one-in-a-million chance that any one person will carry the defect in an FA gene that causes Fanconi anemia, and the only way for a child to get it is for both parents to carry the same defect.

The odds of that happening are astronomical, and even then, there's a three-in-four chance any children born will still not come down with the disease.

But hundreds of western Montanans have responded with thousands of cards and letters for Simon over the last two years - enough to fill storage sheds, his mother says, and one reason she believes her son has beaten the odds so far.

Wamsley is making sure a few who have sent things regularly - such as “O.G.B.” and “Russ and Mrs. Russ,” who mail Simon a $5 allowance every week - will have a chance to finally meet the boy who has been at death's door too many times.

“He's been hospitalized 19 times since his transplant, he's been in I.C.U., he's been in diapers, he's been in a wheelchair, he's been on oxygen, he's had a fungus in his lungs, he's had infection after infection,” Wamsley says. “It's been horrific. He doesn't want another transplant, because the first one was so difficult. But we're going to have to have a talk, because he'll die without another one.”

Her stepson, who checks on the Missoula apartment and picks up the mail about three times a week, discovered the sewage, which had entered all three bedrooms and was making its way down the hallway, according to Wamsley.

“It's pretty nasty, I understand,” she says.

All their belongings are now in a storage bin in the driveway and Simon himself will not be allowed into the apartment due to his fragile immune system.

“It's really disappointing, because one of the things Barry really wanted to do was go back to his actual home,” Wamsley says. The family has bounced around in Seattle for two years, and is back at the Pete Gross House, an apartment building specially set up for cancer patients, where they originally lived. They've also stayed in motel rooms, and were at the Ronald McDonald House in Seattle until the state of Montana deemed Wamsley a Washington resident.

“You can only stay at the Ronald McDonald House if you're from 100 miles away, and if they say you're a Seattle resident now, you can't stay there anymore,” Wamsley says.

Without a car to get around in, and unsure where they'll stay when the weekend arrives and “O.G.B.” has out-of-town visitors arriving, Wamsley says she still hopes to make her son's homecoming as special as possible.

She readily provided her cell phone number (see accompanying information at bottom of this story) and asked any of her two children's friends from their Missoula days to contact her.

“Nothing but good has come from putting our contact information in the paper,” Wamsley says. “The people of Missoula and western Montana have been amazing, and I truly do not believe Barry would still be fighting so hard if it weren't for them. You get to the point where you think you can't go on, but you do. They have given us all the strength to do that.”

Give a call

Were you a friend of Barry Simon when he lived in Missoula, or his sister Brittany? They'd love to see you while they're home through Monday. Contact their mother, Cindy Wamsley, on her cell phone at (206) 369-7176. If you'd like to send Barry a card or letter once he returns to Seattle next week, his address is 525 Minor Ave. N., Apt. 403, Seattle, WA 98109.

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