Memorial service honors life of Barry Simon
By VINCE DEVLIN of the Missoulian

As a rainbow rose up and disappeared into the low clouds over nearby Blue Mountain and a teddy bear snuggled next to the young boy's body in an open casket, Barry Simon's family and friends gathered Wednesday morning to celebrate his short life on this earth.

Two of Simon's classroom teachers, Tamra Reschke and Ann Smith, remembered him as a talkative and ever-smiling “whirlwind” and his P.E. teacher, Glenn Moffatt, said whirlwind was “an understatement.”

Through their tears, his old classmates described a friend who could be counted on to pick them up when they were down, neighbors called him the sweetest boy they'd ever met and one of his older sisters, Brittany, called him her hero.


“I couldn't have picked a better brother,” she said. “I'm older, but in many ways he was my big brother. I'm so proud of him, how strong he was, how in the final days, instead of crying, he laughed.”

Laughed? Less than 24 hours before he died, Barry Simon was not only laughing. He apparently was still chasing girls.

“When I was over to see him Friday night,” said Madelyn Roy, one of Simon's old classmates and best friends, “he said, ‘So, Maddy, do you have a boyfriend?' ”

As she mimicked his tone, it was clear Barry was ready to apply for the job if it was open.

The next afternoon, Simon, 13, died in his mother's arms after a five-year battle with a rare genetic disease - for which there is no cure - called Fanconi anemia. Most of the last two years were spent in Seattle in a grueling attempt to prolong Simon's life into his 20s or 30s via a bone marrow transplant.

For some of the 100 or so people who gathered for the service at Christian and Missionary Alliance Church in Missoula, a slide show highlighting Simon's 13 years - including pictures from Seattle - may have been their first glimpse as to what the boy had been through, and how hard he had fought, the last two years.

Simon left Missoula in August 2005 as a wiry 11-year-old but as infection after infection pounded him after the transplant, the medications he was on doubled his weight and inflated his head and torso to twice their normal size.

“Barry taught us all how to live life to the fullest,” one of his physicians from Seattle Children's Hospital said in a letter read at the service. “He never complained, yet he always challenged us to do the right thing for him and help him stay out of the hospital.”

Indeed, said his mother, Cindy Wamsley, his happiest days were his most recent, once the decision had been made to halt the daily blood transfusions and all but a handful of the medications that were keeping him alive.

That meant he could finally come home, to Missoula, where hundreds of people had sent him thousands of cards and letters during his stay in Seattle.

Simon stayed active up to the end, when a Hummer stretch limo arrived at the family's Missoula apartment on the morning of his death to take the boy and his family to Saturday's Montana-Weber State football game.

He'd gone to Little Grizzly football games two days before he died and spent several hours shopping at the mall the day before, but wasn't up to attending the Grizzly game, a trip arranged by Montana Highway Patrol Officer Richard Hader and the Montana Hope Project.

The same stretch limo returned to the apartment Wednesday to deliver Simon's family, including his mother and stepfather, Richard Wamsley, and sisters, Jamie Mullikin and Brittany, to the funeral.

Even after coming home to die, Simon had made new friends - from Mayor John Engen, who spoke at the service and admitted to filling Barry with “far too much caffeine and sugar” during an otherwise unsuccessful shopping trip to buy a Simon a ferret, to April Christofferson of Lolo, who told of meeting Cindy and Barry in a supermarket after they moved home last month.

“I was at the meat counter, Cindy was talking to the butcher, and from their conversation I could tell Barry was sick,” Christofferson said. “Barry came over and asked me what I was buying, and I showed him the salmon I had.”

The boy considered it for a moment, then walked behind the meat counter, grabbed something, came back out and slapped a 𔄚-for-1” label on the salmon package.

“Now you can get more,” he told her with a mischievous smile.

Before they parted ways, Christofferson had learned of the boy's desire to get a pet ferret, and vowed to find him one - which she did, in Coeur d'Alene, Idaho.

She delivered it two weeks ago.

One of Brittany's friends, who introduced herself as Mandy, told the crowd she had only met Barry once, “but it was like meeting an angel.”

“I said hi to him, and he said, ‘Come give me a hug,' ” she said. “I only knew him two hours, but he touched my life in a way nobody else has.”

A Missoula woman who met Wamsley and Simon at the Ronald McDonald House in Seattle while her son was sick, and whose son died in January, told the crowd she took great solace in the thought of “John and Barry being in heaven together, and saying, ‘Look at where we are.' ”

“Now,” she said, “they can be the little Tasmanian angels that they are.”

The Rev. Chuck Lee, chaplain to the Missoula County Sheriff's Department, officiated at the service, which included Simon's stepsister, Kellie Wamsley, singing “Heaven Must Have Needed a Hero” and Nita Hamilton Smith singing “Somewhere Over the Rainbow.”

“I never thought this day would come so soon,” said Madelyn Roy, the girl who had caught Simon's teenage eye. “Thirteen is unfair.”

Hader, the highway patrolman, marveled at “the dignity at which a young man, at the age of 13, had entered into the next world.”

“I was truly amazed,” he said.

And as the mourners filed past the open casket after the service for one last look at the boy, you knew Barry Simon had to be smiling someplace.

When her turn came, Madelyn Roy leaned in and kissed him.

Reporter Vince Devlin can be reached at (406) 319-2117 or at vdevlin@missoulian.com.

Missoula boy’s story worth reading
Thanks For Sharing, Barry

Thirteen-year-old Barry Simon died Saturday.

The Missoula boy had caught the attention and admiration of hundreds across the state during his fight with a rare genetic disease called Fanconi anemia.

During his past two years of medical treatment in Seattle, hundreds, most of who had never met Barry, wrote letters and sent email—one couple even doled out a weekly $5 allowance.

Early last month, Barry happily quit the transfusions that had been keeping him alive, stopped taking all but a few of his 30-plus medications and returned home, where he could be surrounded by friends and family, to die.

Occasionally there are stories that make you stop. Stop worrying about your own problems. Stop wasting time. Stop and appreciate your health. Barry’s story is a stopper.

If you haven’t read Vince Devlin’s stories about Barry (Last goodbye: After two years in Seattle, Barry Simon comes home to die; and Barry Simon dies in mother's arms), read them. I can’t tell you what you’ll gain from Barry’s story; I imagine it’s a different lesson for each person. But, I can tell you you’ll gain something. I can’t imagine how you couldn’t learn from a 13-year-old who’s able to face something most of us are terribly afraid of with such candor.

Barry’s story also serves as an important reminder to journalists: Sometimes the best stories don’t come from the borders of war-torn countries, political scandal, or crime. Sometimes they come in the form of a sick 13-year-old boy who’s wiling to share his story.

By Keriann Lynch, 10-02-07

Barry and his mom did it right. I am so glad that he had a good week. It sounds a lot like you. Remember how we took you to Toys R Us right before you died. It wasn't such a hot trip. Also, you and I had tickets for the University of Minnesota football game, but you got a fever and we didn't go.

I feel so bad for Barry's mom, but I am glad he isn't suffering any more.



Boy with rare blood disease dies

By VINCE DEVLIN - Missoulian - 10/01/07

MISSOULA — Cindy Wamsley curled up next to her son in his bedroom Saturday afternoon, and whispered in his ear.

“It’s OK to go to heaven,” she told him.

“Mommy, I’d get there faster if I knew how,” Barry Simon answered.

They fell asleep together. Wamsley opened her eyes a half hour later.

Barry didn’t.

The 13-year-old Missoula boy, who captured the hearts of hundreds of people during his two-year battle with a rare genetic disease called Fanconi anemia, died in his mother’s arms at about 3 p.m.

“I woke up and kissed his cheek, and he didn’t move,” Wamsley said. “He looked so happy. There was no pain, no fear on his part, not one bit. It was so peaceful.”

Simon died after one of the best weeks of his life since he left Missoula in August 2005 to undergo a bone marrow transplant.

He got to see his oldest sister and grandfather, who traveled from California. Several old classmates and many people who had written him cards and letters stopped by to say hi. Russ and Shirley Van Tine, who have faithfully mailed him a $5 weekly allowance since the transplant, came by to tell Barry they were raising his allowance to $10.

“Because he’s a teenager now,” Wamsley said. “Barry was so happy.”

At the invitation of coaches, Simon attended Little Grizzly football games Thursday.

“Barry did not want to go, but I forced him,” Wamsley says. “He had the most beautiful time. I wasn’t sure where I was going and parked about as far away from the field as I could have been, but they held the game up until we got there because Barry was the honorary team captain.”

In a wheelchair because he was too weak to walk long distances, Simon performed the coin flip, then was surrounded by almost 300 football players his own age who chanted “Barry! Barry! Barry!”

“Then they high-fived him,” Wamsley said. “He got a high-five from every one of them. Next thing I knew he was out of his wheelchair and chasing his sister around, shooting Silly String at her.”

On Friday the family was off to the mall, where they spent six hours shopping.

“The last two days, you could hardly tell he was sick,” Wamsley said.

Saturday morning was different.

Paint for his room

A Hummer stretch limo pulled up to the family’s small Missoula apartment. Simon and his family were to go to the University of Montana’s homecoming game against Weber State, on a trip arranged by Montana Highway Officer Richard Hader and the Montana Hope Project.

Hader had gotten sideline passes for all of them.

But Simon, who stopped the daily blood transfusions that were keeping him alive three weeks ago, and went off all but five of his 30-plus medications two weeks ago, wasn’t up to it. The limo left, and later Simon asked to take a nap.

Simon had wanted his bedroom painted black, and Wamsley and daughter Jamie had about a third of it finished Friday when Jim Bauer, another of the boy’s regular letter-writers, called Wamsley to see if there was anything he could do.

“Finish painting?” she suggested.

Bauer came over that evening and completed the job, then arrived Saturday morning to help put up black curtains.

“It does not look morbid,” Wamsley said. “It looks warm, calm, peaceful. It’s what Barry wanted he wanted to be able to open his eyes and have it be dark.”

When Simon asked his mom to take a nap with him Saturday afternoon, Bauer carried the boy from the living room couch into his bed.

The little apartment was filled with family and friends including April Christofferson, who recently bought Barry a pet ferret but Wamsley shooed them out as she and her son curled up in the bed and she whispered the last words Barry would hear.

“It’s OK to go to heaven.”

Barry’s story

Simon was born March 30, 1994, in Walnut Creek, Calif., underwent surgery immediately and spent the first 19 days of his life in the intensive care unit.

“He was born with his esophagus and trachea not connected,” Wamsley says. “He came into this world a lot harder than he left it.”

Simon is survived by his mother, two sisters Jamie Mullikin of Sacramento, Calif., and Brittany of the family home; his stepfather, Richard Wamsley; and Wamsley’s children Robert, Michael, Kelly and Greg; his grandfather and his wife, Lemual and Rozzane Southorn of Redwood City, Calif.; and his grandmother, Anita Smith of Modesto, Calif.

“He’s home now,” Wamsley said. “He waited until his family was here, he waited until his room was painted black.

“God loaned me Barry for 13 glorious years, and I’m so grateful I had them with him. He’s in heaven now, where he can be happy and healthy. And he was so brave.”


I just had to close my door so no one would hear me weeping.

You know how I've been talking lately about very special people. Barry and his mom are incredible.



Last goodbye: After two years in Seattle, Barry Simon comes home to die

By VINCE DEVLIN of the Missoulian
Don't be afraid. He's not.

Thirteen-year-old Barry Simon is dying, and he knows it.

But he's happy - happy to be home in Missoula after two grueling years of medical treatment in Seattle. Happy both his sisters are with him. Happy his days will no longer be spent getting the blood transfusions that have helped keep him alive, happy there will be no more poking and prodding of his bruised and battered body.

He is happy to be done with hospitals.

Simon's mother, Cindy Wamsley, says doctors have told her it's possible Barry may not live to see October.

"He's been in hell long enough," Wamsley says softly. "It's time for him to go to heaven."

They stopped the transfusions two weeks ago. On Monday, they took him off all but a handful of the 30-plus medications he was taking daily.

Hospice volunteers arrived in the family's small Missoula apartment Tuesday to begin helping Barry, his mother and his two sisters through the final days.

Now, the friends he hasn't seen in two years, his old teachers, the people who have faithfully written him while he was in Seattle, can help too.

Simon wants to see them before he dies.

Don't worry about it being awkward. He knows he's dying, you know he's dying, so what's the point in talking about it?

No, he'd rather show you his new ferret, which his mother named Sir Lancelot but Simon renamed "Sure Sleeps a Lot." Maybe watch a movie, or play a game. Have some fun. He doesn't want you to come say goodbye, he wants you to come say hello.

Don't be afraid.

He's not.

You've probably got a better chance of winning back-to-back Powerball jackpots than you do of coming down with Fanconi anemia, the rare genetic disease that is killing Barry Simon.

Only one in a million people carry the defect in a gene that causes Fanconi anemia and could be passed on to a child, and the only way to get it is for both your parents to carry the same defect. What are the odds against that?

Astronomical. Even if, against all odds, both parents carry the defect, there's still a 75 percent chance a child won't come down with the disease. Barry's sister Brittany, who shares the same biological father, is a healthy teenager.

But Barry went from being an energetic 7-year-old to a lethargic 8-year-old, and was diagnosed with Fanconi anemia in 2002. There is no cure, but a bone marrow transplant can prolong a patient's life into their 20s or, if they're lucky, even their 30s.

It can also lead to deadly complications. Since Barry simply tired easily back when he was first diagnosed, Wamsley asked doctors to postpone a transplant as long as it was safe to do so.

For three years, they did.

In 2005, they said it was time. Wamsley took her son to Seattle Children's Hospital for the transplant.

If things went as hoped, Barry and his mother would have been in Seattle for just over three months. They wound up stuck there for 14 months before doctors said Simon was well enough to return home in October of 2006.

By then, Wamsley was committed to the medical "dream team," as she calls it, in Seattle that had helped Barry fight off countless infections, several of which had put him at death's door. Against her son's wishes, she made the decision to keep him in Seattle.

That's where he could receive the best medical care if anything went wrong, she said at the time. She was going to bring Barry back to Missoula for an extended visit, but Seattle is where they would live.

"Missoula is home to him," Wamsley says. "Seattle didn't feel like home, and he was very sad, but it felt safe to me."

The Missoula visit didn't come off. Ten days later, a staph infection put Simon back in the hospital, and Wamsley knew Seattle had been the right decision.

Barry takes a nap on the living room couch at his Missoula home while his mother, Cindy Wamsley, sits close by. "He has been in hell long enough," says Wamsley. "It's time for him to go to heaven."

Photo by LINDA THOMPSON/Missoulian

Has she made the right decision now?

Of course she has. Barry has been through so much - hospitalized 20-some times since the transplant with infection after infection, sometimes landing in the intensive care unit with problems such as a fungus in his lungs, near death more than once, his weight doubling at one point because of the medications he was on, so weak at times he was confined to a wheelchair and forced to wear diapers, monthly transfusions that became weekly and, at the end, daily.

He's just not getting better, and the only possible way to keep him alive would be to start all over again with another transplant, this time with Barry in much weaker condition, and put him through it all again.

"He wanted to be done quite a long time ago," Wamsley says. "I wouldn't let him, but it's time now. It's past time. It's his body, it's his disease."

The boy has been in on every discussion, and understands that as his organs shut down, it is most likely kidney failure that will kill him.

But he's had some of his best days since the decision to stop treatment was reached.

"He's more alive now, and happier than I've seen him in two years," Wamsley says. "To me, that just confirms that this was the right thing to do. He's got my blessing to go now in God's time."

Wrapped in a blanket, Barry laughs at an Adam Sandler movie while his mother, sitting on the floor next to him, talks about her son's pending funeral. She wants people to wear blue or green, because those are Barry's favorite colors. She wants an open-casket funeral, but wants his body to be cremated after the service.

The conversation doesn't seem to bother the 13-year-old whose funeral is being planned in front of him.

"I don't care," he says when asked. "I'm OK."

"He wanted to know what cremation meant," says Kristy Gordon of Hospice of Missoula when the subject was broached a day earlier.

"Barry wants to be buried, and I didn't have the right words for him not to be afraid of cremation," Wamsley says. "I want to be able to put his ashes in my backpack and take him to the mall with me. His stepfather wants some ashes to keep. His sisters want some so he's always with them. Hospice explained it perfectly."

Black sheets and pillowcases. So as the end comes, and Barry bleeds out his nose or knuckles (which he's been doing lately) or anywhere else, it won't carry the same impact that red blood on white sheets and pillowcases would.

It's one of the tricks of the trade, Hospice knows, and Barry has taken it a step farther.

He wants his whole bedroom painted black.

Morbid?

No, it's a party.

If you come to visit Barry in the coming days, be prepared to run a paintbrush down the wall of his room.

"Barry wants it black," Wamsley says. "He figures it will help him go to sleep easier. I don't say no to my boy very often anymore, and if he wants his bedroom painted black, it's fine with me. C'mon, bring a paintbrush and a casserole. I'll repaint it white after he's gone."

It will be hard to imagine she won't have help with either color. Hundreds of western Montanans responded to her pleas to write Barry during the last two years, and Wamsley credits those cards and letters with keeping her son fighting during his toughest times in Seattle.

"I got buckets-full of mail," Barry says. "Thousands of letters. It was overflowing."

"O.G.B." - someone who called herself "Old Grandma Barbara" - has written him virtually every day for two years. A couple named Mr. and Mrs. Russ Van Tine have mailed him a card and a $5 allowance once a week since the ordeal began.

These are just some of the people Barry wants to see now, along with his old friends and teachers.

"Mrs. Reschke and Ms. Smith," he says. "Madeline and Melissa. Colin, Cheyenne, Justice, Quin. Molly, my big sister. This girl (Brea, of Clinton) who wrote to me in Seattle. There are so many, and I can't remember everybody's name."

Molly was from Big Brothers Big Sisters. "It takes forever to get a Big Brother," Wamsley says, "and because of Barry's condition, they gave him a Big Sister so he didn't have to wait."

There may not be much time left. The closer it gets to the end, Gordon says, the harder it is to predict when it will come. Jamie, his oldest sister who lives in the Sacramento area, has given up her last two Thanksgivings with her new husband to be with Barry in Seattle, and is in Missoula now. Brittany, his other sister and a student at Big Sky High School, laughs with and teases her kid brother endlessly.

"Brittany refuses to be anything but positive around Barry," Wamsley says. "She only cries when she's alone in the shower. Sometimes she takes five or six showers a day. She's been the best big sister anyone could have."

Whether it was the incredible bad luck it took to come down with Fanconi anemia, or his family's story - Cindy Wamsley, a former methamphetamine addict, brought herself and her children to Missoula by bus from California in 2000, where she knew no one who could sell drugs to her, in order to break herself of the habit - people responded.

University of Montana basketball coach Wayne Tinkle, who promised Barry a party when he got home from Seattle, was there to greet him when Barry came back to Missoula for the first time since his 2005 transplant earlier this summer on a hastily arranged trip (sewage had backed up in Wamsley's apartment).

Mayor John Engen, who had promised Barry a tour of the city once he beat the disease, took him ferret shopping when Barry arrived home for the final time earlier this month.

"I saw a woman walking around with a ferret on her shoulder in Seattle," Barry explains, "and I wanted one ever since. They're cute and cuddly."

There were no ferrets for sale in Missoula at the time - Engen and his wife treated Barry to a day on the town after ferret shopping failed to come up with one - but a woman in Lolo, named April, located a young ferret for Barry in Coeur d'Alene, Idaho, and drove over and bought it a week ago Saturday.

She delivered it at 11 o'clock that night.

"I love how he sleeps," Barry says of Sure Sleeps a Lot. "He sleeps on his back with his paws in the air. It looks like he's dead."

Don't be uncomfortable with a dying boy talking about how his new ferret looks dead when he's asleep. Don't cringe at the thought of the youngster painting the bedroom he will die in black.

If you knew him before he got sick, if you have written to him since, stop by and say hi to Barry Simon.

Don't be afraid. Be happy you have the chance to.

He is.

Reporter Vince Devlin can be reached at 1-800-366-7186 or at vdevlin@missoulian.com.

Come say hello

Barry Simon would love to see the people who have been important to him in his short life - old friends, classmates and teachers from his days at Franklin and Paxson schools, as well as people who have faithfully written to him during the two years he spent in Seattle battling Fanconi anemia. The family is back home, and lives at 933 S. Fourth St. W., Apartment B, in Missoula. Contact his mother, Cindy Wamsley, at 493-0002.

Mom told me the other day that one of the kids at Georgetown who we know had died. His name was Casey and his life was really hard. He lost his parents and his sister. I think his mom and his sister had the same kind of cancer he had. My friend Hugh and I bought him a computer last year 'cause he really wanted one. Casey had just been to the Harry Potter party. I thought it was so good that he was there. I can't believe he is dead now.

We also bought Barry Simon a computer for his birthday. I have a picture of him here along with the pictures of you and Mom and Jack that are next to my desk. His mom sent it to me.


September 2, 2007

Barry Simon Coming Home
By VINCE DEVLIN of the Missoulian

He's fought for so long. Been through so much. Suffered more pain in two years than most people will endure in a lifetime.

It's time, his mother says through her tears.

Barry Simon is coming home.

The 13-year-old will board a private plane in Seattle Wednesday with his mother, Cindy Wamsley, and sister Brittany.

He's coming home, to Missoula, probably to die.

“He's done,” Wamsley said softly over the phone Friday. “He's so tired. Nothing they're doing is working. His body is just killing itself.”

His doctors have told Wamsley her son, who was diagnosed with the rare and often fatal disease called Fanconi anemia at the age of 11, is not likely to live to see 2008.

“He wants to come home,” Wamsley said. “He wants to be in Montana.”

Simon understands what's happening, his mother and sister said.

“He doesn't want to talk about it,” Brittany said. “He doesn't let us know what's wrong. But he's worried what my mom and I will do without him.”

Simon was in the room Friday morning, when all nine of his attending physicians huddled with the family for two hours. The decision to forgo another transplant and return to Missoula had already been made, and the doctors talked about what to expect once they're home.

“He has no immune system left,” Wamsley said. “One little infection will kill him. But they said it'll most likely be kidney failure. They said it's a very peaceful way to go. Your kidneys put out a poison that just puts you to sleep.”

Wamsley was scrambling to find someone who could drive a U-Haul carrying their belongings and towing her car from Seattle to Missoula - she has to be on the plane with Barry - and fretting about getting back into their apartment. Sewage backed up in the apartment in June, damaging many of their belongings and forcing Wamsley to box up and store most everything else they had left behind.

The five days spent doing that was the only time Wamsley and her children have been back to Missoula since they left for Seattle in August 2005 for Simon to undergo a bone marrow transplant.

Angel Flight West, a group of private pilots who donate their planes and time to fly people with medical and other compelling needs, got them to and from Missoula in June, and may bring them home Wednesday. But Missoula Mayor John Engen's office was attempting to line up a local private jet to make the trip faster and more comfortable, Wamsley said.

Over the past two years, many western Montanans responded to Wamsley's requests for cards and letters to bolster her son as he fought the disease. The walls of his hospital rooms have been plastered with the correspondence, and Wamsley has said she could fill storage sheds with the thousands of pieces of mail he's received.

A handful of people have written faithfully for two years, and one woman has mailed something every single day.

Many may have been moved to write simply because of the astronomical bad luck it takes to come down with Fanconi anemia. There's a one-in-a-million chance any one person will carry the defect in an FA gene that causes the disease, and the only way for a child to get it is for both parents to carry the same defect. Even then, three out of four children never develop symptoms.

Too, they may have responded because of the family's story. Wamsley is a former methamphetamine addict who got off the drug 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's been clean since, 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 his bicycle.

The diagnosis of Fanconi anemia led to the transplant, necessary for anyone to have a chance to survive.

Since, it's been a roller-coaster ride. Simon was given the OK to return home more than once, only to have infections cancel the trips. At one point, her son was doing well enough that Wamsley thought he'd beaten the odds.

“Barry's going to be 13 on March 30, and I didn't even think he'd see 12,” she said back then. “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.”

But every good spell was followed by worse ones.

When he finally did make it back for five days on the hastily arranged June trip, Wamsley described some of what her son had been through since the transplant.

“He's been hospitalized 19 times since his transplant,” she said then. “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. It's been horrific.”

Doctors knew then the boy would not survive without going through another transplant, but his condition now is much worse than it was two years ago.

“He's sleeping 22 hours a day,” Wamsley said. “He lost six pounds in four days. He's fought for so long, and he is so tired. If I'm going to lose him this year, how can I put him through another procedure and surgery?”

Brittany has been amazing through it all, Wamsley said.

“She's so strong, she's been so uplifting to Barry,” her mother said. “She doesn't cry until she's alone in the shower.”

“I want his last memories to be happy ones,” Brittany said. “I try not to fight with Barry or argue with him. I just want to keep him laughing and smiling while he's awake.”

When he is awake, Barry talks about learning how to drive, going to high school - the things other boys his age would be talking about, Wamsley said. He wants to get a parrot when he gets back to Missoula, and Mayor Engen has promised to take him shopping for one.

“God put him here for a reason,” his mother said. “His journey in life is about completed. He's touched so many lives, and so many people have touched ours.”

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.

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 vdevlin@missoulian.com

Great news!



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 vdevlin@missoulian.com

Today this boy is getting a computer that my friend Hugh and I sent to him for his birthday. His birthday was yesterday. I hope he wasn't too bummed that he didn't get what he wanted on that day, but I know he'll be psyched today.



I read a story about him in his hometown newspaper. He lives in Montana, which is one state over from Minnesota. North Dakota is in between. He is in Seattle right now where he is recovering from his bone marrow transplant. He has Fanconi anemia just like you and Molly and Amitai. Barry has had it really rough.

Molly is in town right now with her family. They are doing tests but not because anything is wrong. They are trying to help people figure out how to fix Fanconi and other things that make people sick. Here is a picture of you, Mom, Molly and another girl who has Fanconi named Emily.



We have gone out to dinner with Molly and her brother Adam and her sister Delaney and her mom and dad twice this week. Jack has told Mom that it is hard for him to see them. He said that it makes him think of you.

He said something very sad and interesting because it is so grown up.

He said that he thinks that he is sadder than me and Mom about losing you. He explained that while Mom and I have each other, all he had was you.



I understand what he is saying.





You were very sweet with him.



Barry Simon looks ahead to turning 12
By VINCE DEVLIN of the Missoulian

Barry Simon, the Missoula boy battling a rare disease called Fanconi anemia, will live to see his 12th birthday next week.

Two months ago, they weren't sure that would be the case.

“He was literally on death's door in January,” his mother, Cindy Wamsley, said earlier this week in a telephone interview from Seattle, where she and her son have been stuck since last summer.

“I was in a conference on a Friday, I can't remember the date, where they were going over quality-of-life issues and just what I was willing to let him go through,” she says.

Simon's two sisters were summoned from California to say goodbye to their little brother.

“I mean, he was unconscious, drugged up, tubes running everywhere, in diapers,” Wamsley says. But the sounds of his sisters' voices seemed to motivate him.

More than two months later, he and Wamsley left Children's Hospital on Tuesday for new digs at the Ronald McDonald House in Seattle.

Tuesday was only the eighth day this year Simon, who attended Paxson Elementary School, has not spent in the hospital.

He is not well, not by any means. Medications and steroids have contributed to a huge weight gain for the boy, who was a wiry kid of 60 pounds when he left Missoula last summer to undergo a bone marrow transplant.

His weight nearly doubled, to 112 pounds, after the transplant, and he's currently at 97 pounds.

The hospital stay - he came down with life-threatening infections in his lungs - and the weight gain have made it almost impossible for him to walk.

“He can go about 20 feet and he's done,” Wamsley says. “He's tired and out of breath. It's like he's 11 years old, going on 90.”

He has come down with hypertension and diabetes, and is on a strict diet.

“Sodium affects blood pressure, carbohydrates turn to sugar and sugar affects diabetes, so there are a lot of things he can't have,” Wamsley says.

A typical day might include unsweetened cereal and nonfat milk for breakfast, three fish sticks and a side salad with a tablespoon of dressing for lunch, and spaghetti made with a low-sodium sauce at dinner time.

“You start reading labels, everything has sodium in it,” Wamsley says. “There are not a lot of options to choose from. It's very bland, very plain.”

Wamsley has her mother on a mission to find a laptop computer for Barry for his 12th birthday, which is March 30. It's what he wants. Asked if people back home wanted to send him a present, she said he loves calling friends and his stepfather back in Missoula, and his sisters and other relatives in California. He has a cell phone from Net10 where the minutes are pre-purchased. Net10 cards are available at major retailers such as Target, Wal-Mart and Kmart.

The 20-foot-long hikes he takes - which he tries four or five times a day - may not seem like much, but it's a huge improvement from January.

On Jan. 29 he was only able to walk five feet, and it was extremely difficult. But it was Cindy Wamsley's birthday that day.

And that was Barry's gift to his mother.

If all goes well in a bone marrow transplant for a Fanconi anemia patient, they can go home 100 days after the procedure.

“We've been here since August,” Wamsley says. “We quit counting after 100. How long have we been here - 180, 190 days? I have no idea.”

To say it's been tough for both Simon and his mother is both obvious, and an understatement.

Fanconi anemia is a genetic disease that only occurs when both parents carry the same defect in an FA gene, and leads to bone marrow failure. The odds of any one person having the defect are one in a million. The odds of both parents carrying it are astronomical. Even at that, there's a 75 percent chance any offspring will not be stricken with Fanconi anemia, and Simon was told he was case No. 992 in the world when he was diagnosed.

Wamsley and her two youngest children - daughter Brittany is living with relatives and attending high school in California while her brother undergoes treatments - moved to Missoula six years ago.

They stepped off a bus in a city where they knew no one, which is why they came here. Cindy, a methamphetamine addict, was desperate to kick her habit for fear she would lose her children if she didn't.

She figured the first step was to move somewhere where she wouldn't have a clue how to get ahold of any meth.

It worked. She's been clean since, she says, and was working as a clerk at a Missoula grocery store before her son fell ill.

She and her husband, Richard Wamsley, are separated, but Richard remains close to his stepchildren, has visited Barry in Seattle and they talk regularly on the phone.

Barry and Brittany's biological father lives in California and has had no contact with his children in years. When Barry learned he needed a bone marrow transplant, Cindy tracked her ex down to see if he would undergo tests to determine if he would be a compatible donor.

He refused.

A match with an anonymous donor was later made. Without the transplant, which carries its own set of risks, most Fanconi anemia patients don't make it past their early teens.

Barry Simon became a bit of a celebrity in Seattle, thanks to people in western Montana.

KIRO-TV did a piece on the boy, mainly because word got out about the volume of mail he receives from back home.

After stories about him appear in the Missoulian, “The mail comes in tubs,” Wamsley says. “It's still the favorite part of his day.”

The walls are covered with the cards and letters, whether they're confined to the hospital, or in a nearby apartment where Barry must remain until his doctors give him the OK to come home.

“I've kept every card because I intended to answer every one,” Wamsley says. “But it won't ever be possible. I mean, I couldn't afford the postage. People in western Montana have just been incredible, and they have no idea what it's meant to Barry.

“It's been the best part of the journey,” she goes on. “People tell Barry how his story made them grateful, that they realized the problems in their lives are just speed bumps compared to what he's going through. He loves it that people tell him they're praying for him. It makes him feel so loved.”

Several people have become regular correspondents, writing Simon once or twice a week or more.

“They're not strangers anymore,” Wamsley says. “They're just friends we haven't met.”

A Seattle man who saw the segment on KIRO contacted Wamsley and said he wanted to help out with the birthday celebration.

He's organized a motorcycle ride on April 2, when several Seattle-area bikers will take off on a tour of the Puget Sound area. The original plan was for Barry to ride on the back of one of the bikes, although that appears unlikely now.

“If he can't get out of bed on his own, I don't see how he can ride on the back of a Harley,” his mother says. “But we're going, even if we have to ride along in a car.”

She promised her son long ago he would not spend his 12th birthday in the hospital.

“I know I shouldn't have, but I promised him he wouldn't spend it in here, even if it meant going against doctor's orders and me sneaking him out,” she says.

He talks about the old days, when he could run and play and ride his bike. He misses his friends. He misses his sister, his mother misses her daughter.

They fight on, one day at a time, with a very special day coming March 30.

“I mean, it might be his last birthday,” Cindy Wamsley says, crying softly. “There was no way I was letting him spend it in a hospital.”

And by God, they won't.

Reporter Vince Devlin can be reached at 523-5260 or at vdevlin@missoulian.com

11-year-old boy, family dig in against rare form of cancer

Wednesday, July 27, 2005

By VINCE DEVLIN of the Missoulian



Barry Simon looks like a typical 11-year-old boy but for the fact that he needs a bone marrow transplant soon just to stay alive. Through the tireless efforts of his mother, Cindy Wamsley, left, and sister Brittany, and the good will of the Missoula community, they hope to raise enough money to pay for the operation.

Cindy Wamsley knows she is lucky she didn't lose her children once already.

But now the odds are heavily stacked against her and her youngest child.

He's an active boy. Would be entering the fifth grade at Paxson Elementary School. Loves football, bike riding, skateboarding, riding Jet Skis. If you've got a boat, he'll gladly latch onto a ski rope and be pulled behind it on whatever you've got that floats.

He just got back from a trip to California, where he had a great time. His oldest sister, Jamie, got married. He saw grandparents, aunts, uncles and cousins he hadn't seen in five years.

He is 11 years old. His name is Barry Simon.

In just a few days, he begins the fight of his life.

Fanconi anemia. It is a disease so rare that when he was diagnosed with it in February 2002, doctors told Barry's mother he was case No. 992.

"In the Northwest? The United States? I don't know," Cindy says.

A call to the International Fanconi Anemia Registry at Rockefeller University in New York City provides the answer:

"That would be in the world," said a spokesperson there. "It's that rare. There's a little over 1,000 in our registry now."

It's a genetic disease that leads to bone marrow failure, also known as aplastic anemia. Both parents must carry a defect in the same FA gene for a child to be born with the disease, and then it's a 1-in-4 chance.

But it's a one-in-a-million shot that any one person will even carry a defect in an FA gene, Cindy says. The odds of both parents carrying it in the same gene?

"I don't know," she says. "I guess that's why there's only 992 cases."

After Barry was diagnosed with Fanconi anemia, Cindy Wamsley went into a deep depression.

"I did not come out of my room for a month," she says. "I didn't comb my hair, I didn't eat, I didn't do anything except sleep. It was the only way I could find to avoid thinking about it."

But then, she says, "I came to my senses. I realized I was just wasting time. I was behaving like I had already lost him."

Today, she's on leave from her job with a local grocery store and spends every moment she can with Barry and daughter Brittany.

Brittany will stay behind, with the grandparents of one of her friends, in order to begin her freshman year at Hellgate High School when Wamsley takes Barry to Seattle in August for a bone marrow transplant.

If everything goes as well as can be hoped, Cindy and her son still won't be able to come home until February.

There is no cure for Fanconi anemia. The bone marrow transplant is the best hope for patients to gain a few years they otherwise wouldn't have, and even then, the average age they live to is 22. Patients develop a severe risk for all types of cancers, mostly from the shoulders up - be they brain tumors, skin cancers or cancer of the esophagus.

And the transplant carries enormous risks for Fanconi anemia patients.

Two out of five, Cindy has been told, die before the transplant while undergoing chemotherapy and radiation treatments to destroy the defective bone marrow. Two of the remaining three will die from complications, some of which are unique to Fanconi anemia patients, that ensue after the transplant.

Barry sits next to his mother, playing a game on his PlayStation 2, while Cindy clicks off these statistics. He is well aware of all this, and has been since the age of 8.

"I don't believe in lying to my children," Wamsley says.

And so Barry and Brittany know their mother's life is not a pretty story.

Cindy was a methamphetamine addict in Modesto, Calif., before she and the children moved to Missoula in 2000.

They stepped off a Greyhound bus with their suitcases and nothing else.

"I'd never even heard of Missoula," she says. "I was on meth and homeless. They (Brittany and Barry) remember living in the shelters. I needed a fresh start. I didn't know anyone here, so I knew I wouldn't be able to get my hands on anything."

Life in Modesto was bad, she says, and of her own making.

"The only things I didn't lose were my teeth and my kids, and I was lucky," Cindy goes on. "My teeth I can replace. My kids, I can't."

She says she's been clean since she and the kids got off the bus back in 2000.

"Brittany's more important than drugs," Cindy says. "Barry's more important. I'm more important."

"And I'm proud of her," says Brittany, giving her mother a hug.

"So am I," says Barry.

Brittany and Barry's biological father lives in California. He makes no child support payments, Cindy says, and has had no contact with his children in years.

After Barry was diagnosed with Fanconi anemia, she tracked down the biological father and asked him to be tested to see if he might be a compatible bone marrow donor for his son.

"I even offered to pay for it," Cindy says.

He turned her down.

"Richard Wamsley is our dad," Brittany says of the stepfather who raised them. Although he and Cindy have been separated since January, Richard Wamsley remains active in the children's lives.

He's from Missoula, and he's the one who brought Cindy and the kids here.

"He loves his son and daughter," Cindy says.

She and the children now live in public housing, in a small apartment.

It's a step up from their early years in Missoula, when they parked an old motor home in parking lots or vacant lots, until they were run off.

"I know I messed up in the past," Cindy says. "All I can do is live my life right now and hope my children learn from my mistakes in the past."

It was last month. The girl was playing catch with her older sister. The ball got away from her, bounced across the street.

Seven-year-old Kayla Tyler fetched it and started back. She spied a truck and stepped back - but not far enough.

The truck's mirror slammed into her head.

The death of her niece, of Barry's cousin, gives Cindy Wamsley even more appreciation of the time she has with her son.

Kayla, who lived in Modesto and was the daughter of Cindy's younger sister, was lost in the time it takes to snap a finger.

"Kayla died so suddenly," Cindy says. "It made me so grateful that I still have Barry. I mean, I'm almost going, 'Yea! We get to go have a bone marrow transplant!' "

They put it off as long as they could, as long as his blood counts were fairly good and Barry felt relatively well.

"To see him, he doesn't look sick," Cindy says. "We decided, since the transplant carries such risks, to wait while there was still quality of life for him."

But lately, he's been tiring easily.

"It used to be us telling him to slow down and wait," says his sister. "But now it's the opposite - he's the one telling us to slow down."

Barry gets "every cold there is," his mother says, adding he missed 45 days of school last year.

He's becoming dependent on transfusions.

The disease is taking its toll. Without a bone marrow transplant, Cindy says, the life expectancy for someone born with Fanconi anemia is 12 to 14 years.

It's time.

The good news is, after striking out for a match inside the family, an unrelated and anonymous donor who matches all 10 criteria for a transplant was found in what Cindy describes as a "worldwide search."

"They poked everyone in the world?" Barry asks.

"Well, no," Cindy says. "But probably thousands and thousands."

"Did they cry?" Barry asks with a grin.

Barry will enter the hospital in Seattle on Aug. 23. The dangerous radiation and chemotherapy begin Sept. 13.

There's no telling how long he'll be hospitalized after the transplant, and even after he's released, he'll have to remain within 10 minutes of the hospital for 3 1/2 months.

The slightest infection can be deadly, and the Ronald McDonald House - with families coming and going - is not equipped to provide a sterile enough shelter.

Cindy says she won't leave Barry's side as long as he's in the hospital, even if it means sleeping on the floor.

Once out, the plan is to stay in the Pete Gross House, a 70-unit apartment building near the hospital set up for cancer patients and their families.

Gross, who died of cancer, was the voice of the Seattle Seahawks for 17 years. His family established the house in his name. The rents are expensive, even to Missoulians - between $1,135 and $1,290 a month for the smallest units, studio apartments, which is where Cindy and Barry will stay - but a bargain in the area.

Doctors put Cindy in touch with a family whose daughter has gone through the same procedure. They told her they were in Seattle for seven months, and living expenses cost them $23,000 - a daunting total for a single mother living in public housing, who had to keep from touching her tax return in order to have enough money to drive Barry back to California this summer to attend his sister's wedding and see his family before the transplant.

About 30 local businesses let Cindy put out donation jars, and $5,000 has been collected for Barry's medical payment and expense trust.

They put out a jar at a Paxson sock hop, and Barry's grade-school classmates ponied up $100 of it in one night.

"Missoula is amazing to me," Cindy says. "Modesto wasn't anything like this. We raise $5,000 just in jars? I mean, I know I'm not the only person with a sick kid. I so appreciate what complete strangers have given to us."

They're hoping for a little more help on Saturday, at a benefit at the Town & Country Lounge.

They were driving back from a trip to the lake earlier this month. Kayla's death was on everyone's mind.

Barry turned to his mother and asked, "What if I don't make it?"

It's the first time he'd ever broached the subject, Cindy says.

"I turned up the radio. I didn't know what to tell him," Cindy says. "Then I turned it down and said, 'If you don't make it, you get to be with Kayla in heaven.' "

Cindy struggles to get through this. She knows the odds, and the best-case scenario - that Barry lives into his 20s - doesn't seem like much.

But she also knows the worst-case scenario.

"We go to Seattle together," she says softly. "And I come home alone."

The other possibility suddenly is worth more than anything in the world.

"The transplant takes," she says, excited now. "He lives to be 22, and the longer he lives, the better the chances they'll find a cure, or more ways to prolong his life."

Twenty-two is an average. Some live longer, even into their 30s.

Yes, it's a long shot.

They're taking it.

They're hoping you'll help them out.

Reporter Vince Devlin can be reached at 523-5260 or at vdevlin@missoulian.com

How to help

Want to help Barry Simon and his family with their upcoming expenses in Seattle? An event with food, music and a live auction to raise funds starts at noon Saturday at the Town & Country Lounge, 1616 S. Third St. W.

You can donate directly to Barry's medical payment and expense trust at Wells Fargo Bank, 1800 S. Russell St., to account No. 8249013395.

They'd also love to have more items donated for the auction. To do so, contact the T&C Lounge or Barry's mother, Cindy Wamsley (218-9911).