Monday, September 24, 2007

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.


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

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.

Saturday, September 22, 2007

This weekend is Yom Kippur and the end of summer.

I think Rosh Hashanah and Yom Kippur should be reversed. We should ask for forgiveness, atone for our sins and then have a happy holiday celebrating the New Year. Even with "It is written and then it is sealed," the happy then sad doesn't seem like the right order.

When I was going to High Holiday services growing up, we would always sit in the same place and the same people sat around us in their usual seats. There was no assigned seating. Either Papa Teddy or I would be ready first and then we'd drive separately and get there early and spread out over 3 seats if it was just us or 4 seats if Aunt Jen was in town. Tallis bags are good for saving seats.

Those seats were a few rows from the front to the left side of the bima - or the Churchill High School auditorium stage as I normally knew it.

We always sat next to Mr. Kahn, who lived across the street from us on Ivymount Terrace. His wife wasn't Jewish so he'd come all by himself. He was part of our family for those services.

Aunt Jen would sometimes come in to town and read Torah or Jonah Haftorah. I was always proud to see her up there in front of the whole congregation doing such a great job. She is now helping me with the portion I am going to read at Hannah's Bat Mitzvah.

I am pretty sure I told you about the one time that I had appendicitis on Yom Kippur. Everyone still came over for break the fast at our house even though we were at Suburban Hospital. The best thing was they were able to put me straight into surgery 'cause I didn't have anything in my stomach.

Grandma and I used to stay at shul for the entire day on Yom Kippur. We wouldn't leave. We both really enjoyed the discussion group that they would have between the musaf service and mincha. Not going home made the fast much easier.

I've been thinking a lot about Grandma and you this holiday. I miss you both so much. Today, as I was saying the Mourner's Kaddish during the Yizkor service, who should walk down the steps right next to where I was standing... Ari. That was something.

Your brothers aren't much for sitting around during services. Actually, they spend all their time running around the halls of the synagogue with their friends. I cannot wait for the day when they sit next to me and Mom and I can put my tallis over their shoulders or hold their hands. I loved sitting with my family at Har Shalom. Sitting with everyone makes you feel really close and connected. I miss that.

And I think I have also told you how my other favorite thing around now is crushing acorns. The High Holidays are one of the very few times that I wear shoes with hard soles and heels. The acorns of Cleveland Park don't stand a chance. When I was walking home after services today trying to stomp every acorn in my path, a guy said to me, "Still a kid, huh."

Here is a picture - from a satellite - of a oak tree that grew from an acorn I planted in our yard in Bethesda when I was Jack and Joe's age. I should drive by sometime and get a better photo to show you just how big it is. It is pretty massive.

Remember I told you about the bird that flew into our car last High Holidays. This is definitely a special time of year.

After leaving XM, I now work with a guy named Bill. I am fortunate because Bill is a great person like Hugh and Mr. Koch. Bill visits his mom - who is pretty old and not so well - almost every single day. She is down by Sibley Hospital, where I took you to see Joe when he was born. I don't think Bill's mom recognizes him, but each day he sets aside time to go visit and sit with her.

Grandma once got a special medicine which made her not know who anyone was. She didn't know who I was or Papa Teddy or Aunt Jen. It was very hard and very sad being with her when that was happening. That tells you what a good guy Bill is.

Two days ago I was walking downtown and a man asked me for change. I felt good because I actually had some change in my pocket to give to someone. I never have any change. My silly thinking is if I don't have any money on me then I won't spend it.

Well, after work that day I was walking to the bus and I saw a man go up to a homeless man. Without being asked for money, the man gave the homeless man some dollar bills. He looked the homeless man in the eyes and then shook his hand. That person is a special human being.

Jack got hit hard in the clavicle - that is part of your body below your neck - trying to catch a fly ball at his game last weekend.

The ball really nailed him because it was coming fast and Jack was charging in to catch it.

For a moment I thought it hit him in the face, and I was scared. I truly thought he was going to crumple and lay on the ground in agony and I'd carry him off. Instead he just waved everyone off and kept playing. I haven't seen that kind of toughness, well, since you.

You were unstoppable and I really thought unbeatable too. No matter what they threw at you, chemo, radiation, transplant, transfusions, heart surgery, whatever, you were up and climbing or hitting or kicking or catching or playing as soon as possible.

Friday, September 21, 2007

Okay, this makes absolutely no sense whatsoever. A company named KRYPTONITE makes a SUPERMAN lock. Am I crazy, but it doesn't stand a chance of working.

I did buy the Batman lock, though. I couldn't resist. Criminals don't stand a chance, right.

Here are two other cool Batman things I saw recently that I would have bought you when you were alive. Right up your alley or Batcave.

We bought Springsteen tickets this morning. I am excited for Jack because this will be his first honest-to-goodness rock and roll concert. And what a way to get started.

The tickets sold out in 4 minutes.

You went to see Lucinda Williams at Wold Trap when you were just a little bitty baby. Mom and I couldn't believe that we had to buy a separate ticket for you. You were so young you I was carrying you in your car seat.

That was crazy.

Wednesday, September 19, 2007

I came across this picture of you, Michael and Rachel tonight. The sadness you were experiencing made me think about Michigan and its football team.

"M Go Blue" started the season with two losses, but they finally won this weekend against Notre Dame.

Hey, I also found this picture of the ball that I wrote to you about. This was the first thing I ever bought you guys when I was traveling for work.

And this is just you looking cute. Sweaty, but cute.

We went to JPDS last night for "Back to School Night."

Mom and I went to listen to Jack's home room teacher and then we split up. I stayed to hear Jack's Hebrew teacher while Mom went downstairs to meet Joe's Hebrew teacher. A little later I came down and sat with Mom to listen to Mrs. Berliant talk about Joe's home room.

I must be strange because I like sitting in a semi circle in those tiny chairs.

So I am sitting there a few minutes and all of a sudden I start to cry. I realized it was because of Mrs. Berliant. She and all of your kindergarten classmates really loved you. You were so happy in her class.

When we left, Mom told me she had cried too but before I came down. She was remembering a lot of the same stuff and more.

Tonight going through old photos I found this picture of you and Mom.

You both look incredibly sweet.

When Mom was sitting listening to Mrs. Berliant, she remembered how you'd go and take a quick nap in your little corner of the main office and then run back to class. It was like you were taking a pit stop for energy to make it through the school day.

Mom reminded me of something that I totally did not pick up on. She said that one of the things that got her so sad was that when you died Jack was exactly the same age that Joe is now. Joe will be six in a little less than three weeks. Jack turned six about three weeks after your death-day.

Mom was thinking how Jack came back to Mrs. Berliant's class after Minnesota and you dying. I cannot imagine how tough that was. Jack seemed and was a lot older at six than Joe is now. All the stuff we went through as a family made him have to grow up a lot.

On a funny note, I told Mom how I had a flashback to Camp Tel Shalom while we were at Back to School Night.

The man who ran my camp when I was a kid is now at JPDS. His name is Marshall Green.

To get the parents to go to know the next session was about to start at Back to School Night, Marshall got on the intercom and urged everyone to move along. When I heard his voice booming out over the loudspeakers I felt like I was back at camp.

One of Joe's friend's fathers was at camp with me and he was there last night. We looked at each other and said, "Achshivu, achshivuna," which is what Marshall said on the PA at camp to get our attention whenever he made an announcement. That was 30 years ago but I remember it so clearly.

I may have already told you this, but I play Cat Steven's "Morning Has Broken," and The Beatles' "Here Comes the Sun" every morning to wake up Jack and Joe. That is what they used to play to wake us up at camp. I really have fond memories of hearing those songs playing so loud and clear across the West Virginia hills with the sun rising warm and strong.

Mom told me tonight that Joe finally wants a haircut. Jack and he have really long hair. It reminds me of how we looked in the '70s when I was growing up. We just had long hair then. It wasn't "intentional" or anything, like I think it may be today. A lot of the parents now want their kids' hair long for some reason -- so they look cool or maybe because the parents are remembering back 30 years. I figured that as long as Jack and Joe can see they can wear their hair however they want. And they do look cool.

I went looking for the pictures from when we all went to Sugarloaf when you were little. I found this one, but I know there are more from another hike we took there.

We saw people climbing and it reminded me of when Debbie and Andy took you, Jack and Aaron climbing down on the Potomac. You were strong. Puffy and strong. Your heart was big. There really was no mountain you couldn't climb.

Wednesday, September 12, 2007

Tonight is Erev Rosh Hashanah. We went to dinner at Nana and Papa Sy's. Mom has a cold so she and your brothers went home and I headed over to Adas Israel. I walked up the aisle in the sanctuary and sat down right next to your memorial plaque. I felt like I was there with you. There wasn't very many people there. I thought about you the whole time and cried a bit. It was fine.

When I came home it was nice to see your cousin Michael on the couch in his PJs. He came home with Mom and the boys and is staying the night. He is so handsome. You two would be a strong team.

Joe and Joshua have a bond like you and Michael had.

Joe and Joshua are very close and it makes me feel good to see them together the way you and Michael used to be.

Here is the video about Mr. Koch. He and Hugh couldn't be more different, but they are two of the most important people in my life.

Tuesday, September 11, 2007

Today is 9-11. This day is three months exactly before the day you died. It's going to be five years this December. Fives and tens are usually pretty big. I wonder how I'll feel.

Today, six years ago, was the day the two buildings fell down in New York, the plane crashed in Pennsylvania and another into the Pentagon. I went to high school with a guy on the plane that hit the Pentagon, but I didn't know him all that well. I am sure a lot of moms and dads and kids and uncles and aunts and nieces and nephews and grandmas and grandpas are very sad today.

September 11 is also Bill Price's birthday. He is 93 years old today! Ten more years and he'll catch Aunt Ida. He has a way to go.

I saw Bill taking out the trash this morning as I walked out the door to catch the bus. I wished him a happy birthday. He said that he didn't feel a day older. I told him he didn't look a day older either. Bill is in great shape.

I want to live in our house when I am that old the way he does. He and Michael go for long rides in their convertible Mini Cooper. Soon they will go to Skyline Drive to look at the leaves.

Yesterday I got an email from someone looking for Grandma. I told him that she had died. Joe and I visited her grave when we came out and saw you this weekend. There was a lot of dead grass on her headstone but there was a big storm last night. I am sure that cleaned off the grass, dirt and bird poop from both of your headstones. I didn't have any wipes with me when we visited.

It felt good that someone wanted to get in touch with Grandma and didn't know she was dead.

Monday, September 10, 2007

We are around a lot of people who have survived. It is nice and very hard all at the same time. While we are happy for those people and their families, it is a constant reminder that you didn't make it.

This weekend Mom and I went to a the Bat Mitzvah of twin girls whose mom we know well. One of the girls was a patient at Georgetown a few years back, and she is okay now. Her mom has been helping Hope for Henry Foundation by coordinating events and working with hospitals and all that kind of stuff. She is great.

They have had an extremely hard life, so it was especially nice for them to be able to celebrate a Bat Mitzvah.

On Sunday, Joe and I went out to the cemetery. It was very busy out there. It looked like they were having two funerals and a lot of people were just visiting their loved ones.

Joe said that he remembered you picking him up once. He said he thought it was at Disney World.

When we were getting ready to leave, I knelt down and kissed your headstone like I always do. Then Joe decided he'd do it too. As we were getting ready for school this morning, Joe told Mom this morning that he kissed you.

Thursday, September 06, 2007

Here is a video about Camp Sunshine. We went there a long time ago with you and Jack. For some reason, the thing I remember most is carrying Jack asleep on my shoulder back to our doublewide trailer.

This picture was taken when we were there. It is you, Molly and Emily. It looks like you were blowing bubbles.

You're the only one who didn't make it.

I've been incredibly sad since I read about Barry. I saw Hugh this morning, but didn't say anything about it to him. Why make him sad too.

Sometimes the hardest thing is sticking with something to see it all the way through to the end. And even harder than that can be when you want to to see things all the way through to the end but aren't able to because of one thing or another.

I hope this has a happy ending. I'll never know.

From: Jen Kasten
Date: Aug 4, 2007 10:47 AM
Subject: Special need child in China
To: Allen Goldberg

Hi, Al--

I came across an announcement today about a little baby in China with special needs. From the baby's symptoms (heart murmur and extra thumb), I thought about Fanconi Anemia. I hope you will forgive my ignorance -- do these two symptoms often appear together in the absence of Fanconi Anemia? The U.S. agency that is trying to place her appears to be in Maryland (Silver Spring?). I was just wondering if you might have any ideas to help this baby:

Cradle of Hope Adoption Center is looking for a home for Xuezhou Ji. She is a 14 month old girl who was born with a heart murmur (Fallot tetrad) and two thumbs on her right hand. It is reported that she is happy, and laughs when she is around others. She enjoys being outdoors, dances to music, and is very attentive to her surroundings. She likes to take baths. Xuezhou is likely to need heart and hand surgery, but her prognosis is good.

We are thrilled to report that a generous donor will cover all agency fees associated with Xuezhou's adoption. Her new family will need to cover only homestudy, travel, translation, post-placement and other expenses totalling approximately $10,000 - 12,000.

For more information on this sweet little girl, please contact Amy Weiss at or at 301-587-3300, ext. 221.

Amy Weiss, LGSW
Adoption Social Worker
Cradle of Hope Adoption Center, Inc.
301-587-4400 x221
fax: 301-588-3091

From: Allen Goldberg
Date: Aug 4, 2007 7:34 PM
Subject: Re: Special need child in China
To: Jen Kasten

This sounds like it could possibly be Fanconi anemia. She will need to be tested. Let me do a number of things, including contacting the agency woman directly, see if there are FA resources or families in China, forward this to our doctor and whatever else makes sense. You may have saved this little girl's life.


You are awesome for putting this all together.

From: Allen Goldberg
Sent: Thursday, August 09, 2007 11:48 AM
To: Maryellen at
Subject: FA Resources in China?

Mary Ellen:

A friend forwarded this to me the other day.

Cradle of Hope Adoption Center is looking for a home for Xuezhou Ji. She is a 14 month old girl who was born with a heart murmur (Fallot tetrad) and two thumbs on her right hand. It is reported that she is happy, and laughs when she is around others. She enjoys being outdoors, dances to music, and is very attentive to her surroundings. She likes to take baths. Xuezhou is likely to need heart and hand surgery, but her prognosis is good.

We are thrilled to report that a generous donor will cover all agency fees associated with Xuezhou's adoption. Her new family will need to cover only homestudy, travel, translation, post-placement and other expenses totalling approximately $10,000 - 12,000.

For more information on this sweet little girl, please contact Amy Weiss at or at 301-587-3300, ext. 221.

Amy Weiss, LGSW
Adoption Social Worker
Cradle of Hope Adoption Center, Inc.
301-587-4400 x221
fax: 301-588-3091

Clearly, there is a remote possibility that the girl has FA. I spoke to the contact person, Amy Weiss, who said that the doctors there didn't think she had FA. I explained that the "standard of care" for FA --unfortunately -- is to miss the diagnosis.

I was trying to figure out if there are any FA diagnostic resources in China and saw on the FARF site that there had been a grant a few years back to Xie, Yan, MD, Hubei Medical University, Shijiazhuang, China, Toward a Diagnostic Service for Fanconi Anemia in Central China.

I know it is a vast country but my guess is that they'd be the best ones to do a DEB test for Xuezhou. Do you have contact info for Yan Xie that I can pass along to the adoption agency coordinator. If you think there is a better strategy to pursue let me know.



Van: Mary Ellen Eiler
Verzonden: dinsdag 21 augustus 2007 1:13
Aan: Allen Goldberg
CC: Joenje, H.
Onderwerp: Re: FA Resources in China?

Hi Allen,

The information that I have on China comes from Hans Joenje, PhD, Free University, Amsterdam. In brief, he and Quinten Waisfisz from his lab were invited to Wuhan University, China in 2005 to present on FA diagnostic methods.

This was the first-ever meeting on FA in Wuhan, and probably in China. The primary physicians there are Prof. Qun Hu, Department of Paediatrics, Tongji Hospital, Wuhan, and Fei Chen, Department of Hematology, Zhongnan Hospital of Wuhan University.

Yan Xie, to whom you referred, is a PhD researcher who studied with Hans in Amsterdam, but she is not a physician as far as I know. In any event, the physicians in Wuhan, prior to the meeting with Hans, were diagnosing FA based on physical characteristics alone. After the meeting, they planned to pursue chromosomal breakage diagnostic methods (using MMC), but I do not know if they have yet done that.

Unfortunately, I do not have the e-mails of these two physicians, but Hans probably does. I'll send a copy of this to Hans for his information in case he has additional information for you.

Please let me know if you need additional information.

Best wishes.

Mary Ellen

From: Joenje, H.
Sent: Tuesday, August 21, 2007 4:57 AM
To: Mary Ellen Eiler; Allen Goldberg
Subject: RE: FA Resources in China?

Dear Mary Ellen and Allen,

Yan Xie meanwhile has settled down in the USA, as far as I know.

The best opportunity today for getting a Fanconi anemia diagnosis in China is to get in touch with the Department of Hematology, Wuhan University School of Medicine, 169 Donghu Road, Wuhan 430071, P.R. China.

Tel: +86-27 67813247; fax: +86 27 8730795.

People in the department who are familiar with the diagnosis of FA are:

Prof. Kejian Zhang (director), e-mail :
Fei Chen, e-mail:
Hui Xiao, e-mail:

I hope you will be successful in arranging for a chromosomal breakage test for Xuezhou.

Best regards,


H. Joenje Ph.D.

Dutch Cancer Society Professor of Oncogenetics
Department of Clinical Genetics
Vrije Universiteit Medical Center
Van der Boechorststraat 7
NL-1081 BT Amsterdam

Tel +31-20-4448270
Fax +31-20-4448285

From: Allen Goldberg
Sent: Thursday, August 23, 2007 11:27 AM
To: ''
Subject: FW: FA Resources in China?


I cannot stress the urgency of having Xuezhou tested for Fanconi anemia (FA). The test is called a "DEB" test and below are contacts in China who you can contact about getting the test. There is no way her current doctors can know either way without having this test done. The failure of the blood components associated with this disease doesn't manifest itself until a bit later in life.

I speak from experience; like Xeuzhou Ji, my son Henry was also born with Tetralogy of fallot and a duplicate thumb. It wasn't until he was four years old that his marrow started to fail and he died at seven.

Can you please copy me when you forward the information below about FA testing in China to Xuezhou's doctors in China or her caregivers, and please reference me as a resource.

Thank you so much for what you are doing for Xuezhou. Hopefully she does not have FA, but if she does, acting now can save her life.



From: Jen Kasten
Sent: Thursday, August 23, 2007 12:16 PM
To: Allen Goldberg
Subject: Re: FW: FA Resources in China?

Unbelievably complicated.

The way these special needs adoptions usually work is that an agency in the US gets 3 months to place a batch of kids, and if they're not placed, their names get sent back to the government of China to be sent to a new agency and the process starts over again. Seems unlikely this agency will get the tests done within their 3 month period. So then what happens? Her name gets sent back to China? The government there isn't going to care. Did Amy say anything about the next steps? Please keep me posted.

I also asked my agency about it. They suggested a US charitable organization called "Love Without Boundaries" that may be able to get involved...

From: Allen Goldberg
Sent: Thursday, August 23, 2007 11:36 AM
To: Medical at
Subject: FW: FW: FA Resources in China?

I am reaching out to you a little blindly, I must admit. It has come to my attention that a baby girl in China who is being put up for adoption may be at risk for a very serious genetic disease. There is a test to determine whether she has it or not, but the test is not widely available.

I have located researchers in China who may be able to do the testing. Meanwhile, the test is available in the United States and around the world at a number of centers, including Rockefeller University in New York. I have forwarded this information to the Adoption Coordinator, Amy Weiss (email below) who is providing it to the group’s executive director, who communicates with their coordinator in China.

My worry, expressed in my friend’s email below, is that Xuezhou Ji may not get tested. Given my distance and unfamiliarity with the systems in place, I don’t know the best way to ensure Xuezhou Ji receives the testing and unique care she may need. Is this something that Love without Boundaries can help see through? If not, can you steer me to any other resources that may help with Xuezhou Ji’s case.



From: Karen Maunu (LWB)
Sent: Thursday, August 23, 2007 4:07 PM
To: Allen Goldberg;
Subject: RE: FW: FA Resources in China?

Dear Allen and Amy,

I would be happy to call and arrange this test to be done. Can you please send me this child’s dob and what orphanage she is from? Does she already have a family?

Thank you!

Karen Maunu
Medical Director
Love Without Boundaries
"Every Child Counts"

From: Allen Goldberg
Sent: Wednesday, August 29, 2007 11:24 AM
To: Linda
Subject: Special Needs Child in China - Xuezhou Ji


I am sure that Amy has forwarded all of this information to you about Xuezhou Ji, who you were listing for adoption. I just want to make sure that you have been in contact with Karen Maunu from Love Without Borders, who compassionately offered to ensure Xuezhou Ji gets the proper testing and attention she requires given the possibility that she has a life threatening illness.

If you can copy me on your correspondence with Karen then I’ll know that the connections have been made. I have included my phone numbers below should you need to discuss any of this.

As you can see, there is urgency to finding out whether Xuezhou Ji has this disease or not. The hope that we all share is that she is free of Fanconi anemia; will have her Tetralogy of fallot and bifid thumb successfully repaired; and live a long and healthy life with parents who love her.

Thank you so much for your attention to this matter.


From: Allen Goldberg
Sent: Wednesday, August 29, 2007 1:07 PM
To: maryellen; Lynn Frohnmayer
Subject: FARF and Keywords on Google

Mary Ellen & Lynn:

Mary Ellen, thank you again for your help with DEB testing in China. I was thinking further about that adoption notice that my friend saw posted online…

Cradle of Hope Adoption Center is looking for a home for Xuezhou Ji. She is a 14 month old girl who was born with a heart murmur (Fallot tetrad) and two thumbs on her right hand. It is reported that she is happy, and laughs when she is around others. She enjoys being outdoors, dances to music, and is very attentive to her surroundings. She likes to take baths. Xuezhou is likely to need heart and hand surgery, but her prognosis is good.

We are thrilled to report that a generous donor will cover all agency fees associated with Xuezhou's adoption. Her new family will need to cover only homestudy, travel, translation, post-placement and other expenses totalling approximately $10,000 - 12,000.

We all know that most people might not suspect a bigger, worse challenge like FA. The standard of care is to not diagnose, correct. So I asked a friend at Google what was the best way to bring the possibility of FA to the attention of people who are researching medical conditions or communicating about medical conditions online on their platform. I was interested in almost an “ad-like” solution that pops up or inserts a message if the context – search, GMail, etc. -- provides keyword triggers of FA-type anomalies (I know there is a large universe) and birth defects like “heart murmur,” “Tetralogy,” “bifid,” “no thumbs” and “extra digits” within a few words of each other.

He suggested these two Google resources as possible solutions:
free advertising from google for non-profits
annotate, supplement search results so that searches deliver more relevant, authoritative results. to see an example, search on "diabetes" and look at the trusted sources that have tagged content on the web.

I normally would just tackle this myself but am a bit swamped with work and other challenges right now. I don’t know if there is a FARF person, U of Oregon student or volunteer who might want to check this out at Google and other search engines, like Yahoo. In addition, it might be good to audit the FA references on top lay health and medical information sites, like WebMD. I know this seems to be really “in the weeds” but helping to change the standard of care through communication with medical professionals and possible patient populations must be one of the Research Fund’s goals. Hope this all makes sense.

Meanwhile, I am still trying to get Xuezhou Ji tested. The adoption agency has been less-than-cooperative. I have engaged an organization called, Love Without Boundaries, and its medical director has compassionately agreed to navigate the orphanage and medical systems in China to make sure it happens. Hopefully, she will test negative.

Hope everyone is well out there. Please say “hi” to Dave. Thinking of you always and appreciative of everything you do.



From: Allen Goldberg
Sent: Thursday, September 06, 2007 11:08 AM
To: 'Linda'
Subject: Special Needs Baby in China


Thank you for taking my call last week.

I appreciate all of the work you have done informing Xuezhou Ji’s physicians’ and prospective parents about the need to get her tested for Fanconi anemia. If the prospective parents fell through for any reason, I just wanted to let you know that there is a community of wonderful families with children who have Fanconi anemia who could be added to your prospect pool. These families intimately understand the challenges associated with having a child with FA. I am confident that there are a number who would be undeterred by the diagnosis. If you would like to get in touch with this group, please let me know.

Again, I hope that Xuezhou Ji tests negative and all of this is moot. But just in case, please know that there are parents who would welcome Xuezhou Ji into their families.



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.”