As I told you, Mom didn’t come to the Bat Mitzvah, so it was a huge relief when this woman walked up to me before services and introduced herself. It was Rachel Grossman, who aside from being the mom of Jacob and Talia, wife of Alan and resident of Chicago, has the distinction of having once had a conversation with you.  Jacob has FA and when he was diagnosed she got in touch with us through friends and family. I remember talking to her, and Mom visited with her on a trip to Chicago. But what really made me light up was when she reminded me that she and you had a nice talk with you on the phone about what to do to make transplant at University of Minnesota a better experience for Jacob. 

Your prescription: Magic Closet. 

I didn’t ask her if they actually implemented the whole “closet in Jacob’s transplant room filled with toys and other surprises that produce magic to heal pain and boredom” when needed thing. I hope so. Dr. Henry Strongin Goldberg knew what he was talking about. 

Rachel and I sat together and marveled at the beautiful ark. It was huge. I had never seen so many Sifrei Torah in a single ark before. I think there were at least 12 and they went all the way up to the ceiling. I had visions of rabbis suspended by wires –Mission Impossible style – flying up to grab the uppermost Torahs. We were looking for words to describe it and I think we settled appropriately on “awe inspiring.” 

But the old scrolls really couldn’t compete with Molly for our awe. There she was up on the bimah. As she and the Rabbi and Lisa all acknowledged, she shouldn’t have been there.  As we know all-to-well, Fanconi kills kids, but in Molly’s case, love, science, doctors and faith all came together to create a modern day miracle. People throw around the word miracle a lot. It describes everything from a fake mayonnaise to a World Series championship, but I am confident that everyone sitting in that synagogue was privileged to witness the real deal. 

Molly leading services, reciting her portion and delivering a D’var Torah was probably the most wondrous and wonderful thing that I will experience for a long, long time.  It was, as Mom knew it would be, probably one of the saddest things we could experience as well. It was as concrete a reminder of you dying, of us failing, as most anything could be. But as I explained, I like hitting my head on that wall. 

In her remarks, Molly talked about her portion and how it tied in to her remarkable life story. Her takeaway was the importance of humility. She said that it was incredibly humbling knowing what it took to get her to that moment. From her parents to her doctors to god, she fully understood how much work, sacrifice, innovation and love it took to bring her to the bimah.  In addition to humility, Molly showed great wisdom- wisdom well beyond a Bat Mitzvah but befitting someone who has traveled the difficult, almost impossible journey she has made in her short 14 years. 

I was humbled being there. I was honored to be there and that Molly and her parents thought to make us a part of the service. 

Mom and I were planning to go to your friend Molly's Bat Mitzvah tomorrow. But the more Mom thought about it, she realized just how hard it would be. Yesterday, I had to make a decision. Would I stay home with Mom and your brothers, or head to Denver to see Molly become Bat Mitzvah. My first responsibility it to take care of Mom, Jack and Joe, but I also felt strongly it was important to go be with Molly and her family.

I am now on an airplane looking out at the clouds. Being up in the clouds is totally different since you died. When you are little — at least it was for me — you think that heaven is up here in the clouds. Whenever you see a cartoon, or TV show or commercial and they show heaven, the people or angels are hanging out on clouds. So this is where dead people go.

Even though I'm all grown up now and I know that out this window is just frozen water vapor, I am crying.

Mom asked me how I made up my mind to go. I told her that I wanted to honor Molly and Jack and Lisa and the rest of their family for all that they've been through. It has been such a hard road — perhaps only they and we can really understood just how difficult it really was — and they have made it. Molly is here. She made it.

I also told Mom that I often think about how sweet and amazing it was that they all came to Washington for your funeral. That was an emotionally and physically superhuman thing for them to have done at that time.

And the last reason is maybe a bit more selfish.

Mom and I grieve you in different ways. It is tough to describe Mom's grieving because it is so personal. But the best way to describe it for me is that I charge head first into things that might make me think of you. Sad and/or are hard to do is what I crave. Because for me, the sadder I am… the closer I feel to you.

I have this need to be close to you, and it is getting harder as the years go by.

On the bus on my way to work yesterday I was reading a story Jeffrey wrote about this guy John McCain, who is running for president. Here is part of what he wrote,

"After John McCain was released, in 1973, he learned that on several Christmases during his captivity, his father had traveled to the northernmost reaches of American-held territory, to be as close to him as physically possible."

For this weekend, at least, the place for me to be is Denver.

Here’s the capper.

Yesterday I was scanning some stuff to put on here and on the new blog I started for Joe. The first thing I scanned was this rainbow that Joe's drew at school the other day for me and Mom.

Next in line was Molly's invite.

When I picked it up to place it on the scanner I saw that she and her parents included words from the song Over the Rainbow.

"Sometimes the dreams that you dare to dream really do come true."

You know how I am a sucker for coincidences. That sealed the deal. 

So here I am. Over the rainbow. In heaven. With you.

Looks like Adam Nash just had a birthday. I was trying to do something nice for Molly and it fell through. I feel terrible about disappointing her.

It is Joe's birthday on Saturday. He will be 6. A lot of festivities are planned. Later on I will show you what we got him for his birthday. I'll give you a hint: it has something to do with baseball.

Joe is proud that he is the best underarm farter in school - according to him. He says that Samantha Knapp is pretty good too.



October 1, 2007

BREAKING NEW GROUND

Beth Whitehouse

Oct. 1--The first child in the world born after PGD confirmed he would be a bone marrow match for his older sister is today 7 years old and in first grade.

Lisa and Jack Nash of Englewood, Colo., said they tested their son Adam's embryo to ensure he didn't have the bone marrow disorder Fanconi anemia his sister Molly had and to ensure he would be a tissue match for her.

Finding cure for their daughter

The Nashes speak publicly to people all over the world about what they did to cure their daughter.

"By us being public, other people learn about it," Lisa Nash said.

Fanconi anemia is similar to Diamond Blackfan anemia, the bone marrow disorder Katie Trebing has, in that the patient needs regular blood transfusions to stay alive. However, it is more dangerous. Molly was a few months from death when she had her bone marrow transplant in 2000 using blood from Adam's umbilical cord, Lisa Nash said.

Saving Molly's life was not the sole reason the Nashes had Adam, Lisa Nash said in a telephone interview.

"We had Adam first and foremost because we wanted a bigger family," she said. The Nashes said they would have had Adam through PGD to ensure he didn't have Fanconia anemia, even if it wasn't an option to also check for sibling matching.

"The fact that he was able to help her really was icing on the cake," she added.

Brother's cord blood used

Molly had a bone marrow transplant using Adam's umbilical cord blood the month after he was born. Her bone marrow is now free of Fanconi anemia.

However, there are still concerns about her health. "These kids are still very prone to certain types of cancer. We watch her very closely for head and neck cancers," said Lisa Nash, 41.

Molly has other physical ailments related to her disease. She is deaf in one ear, was born without thumbs, and is fed with a feeding tube, her mother said. Her thyroid failed -- a late-term effect of the chemotherapy that preceded the cord blood transplant -- and she recently had surgery to correct cataracts.

Molly is now 13 years old and is in seventh grade. "The spirit in her and the fire in her -- she is just an amazing, amazing kiddo," her mother said.

The Nashes have since had another child using PGD to avoid Fanconi anemia. Delaine Nash is 4.

The Nashes said they don't talk to the children about the role Adam played in Molly's survival.

"If you ask Adam what happened, he'd say, 'I gave Molly my blood so she would feel better.' Someday when they're old enough, we'll explain it to them," Lisa Nash said. "We want our kids to have normal lives and be just like everybody else."

She scoffs at critics who fret donor children such as Adam might one day feel they weren't really wanted.

"Adam, being the sole male in the family, he is the be all and end all," she said. He is "idolized" and "adored," she said.

Call for oversight

To anyone who worries taking a cell from an embryo -- as is done in PGD testing -- might prove harmful later, Lisa Nash said of her son, "He walks and he talks and he reads. The only thing we see is he can't play basketball, but neither can his father. If you want to attribute something to pulling off the single cell, he can't play basketball."

As for how much they would use Adam in the future to help Molly, Lisa Nash said she and her husband decided before Adam was born they would only use his cord blood and not his bone marrow to cure Molly.

"Adam was brought here because we loved Adam and not for spare parts," she said. The cord blood, she said, was "his garbage. He didn't need it any more. When it came to taking bone marrow from Adam, that wasn't okay in our eyes. That's where we drew the line."

So far, they haven't had to test their resolve.

Lisa Nash said she is a proponent of government oversight of the use of PGD technology. "The government should look at it and put some kind of boundaries and barriers," she said.

Perhaps, she said, insurance companies might also pay for the procedures if they were regulated. She said they spent $250,000 to have Adam, because they had to go through in vitro fertilization five times before it worked. They took out a loan to pay for it.

This is a video from the Super Hero party that we had a few weeks ago at Georgetown. Hackensack and Minnesota had parties too. The party was in the Lombardi clinic, but this movie is from upstairs on the 5th floor. We took the party to the kids who were in isolation and couldn't come to clinic.





"Henry's spirit will live on."

We went out to the cemetery on Sunday. The weather was really nice. We visited Zack Klein, who is so close to you now. I tried to help Zack's mom and dad get something special on his headstone. Unfortunately, it isn't going to happen. I can understand why, but it is still a disappointment.

The next thing that I am trying to make happen is making sure Molly and her mom meet Jon Bon Jovi. That should happen in July. I cannot fail. I'll keep you posted.

I have been spending a lot of time organizing our pictures. There is (are?) a ton. Which is good. I am going to make a big "Henry at St. Michaels" photo book to put out there. I am going to match pictures of you taken in St. Michaels with nice pictures of birds and trees and things that we've taken out there.

Last week was a tough Henry week. Mom and I spent a lot of time thinking of you and crying. Mom rewrote one of the chapters of her book and it is great. It is about you and Bella. All that came from nowhere. I am glad it happened.

I just finished reading a book, The Innocent, written by this guy Harlan Coben. His books are mysteries. I have read a bunch of his books now. I read an essay he wrote in a magazine about his best friend who died two years ago in a plane crash.

Harlan Coben is my age and grew up in New Jersey and his books take place there. Aside from his books being really fun, I am sure that I like them because of my being the same age, Jewish and living in New Jersey when I was little and then with you at Hackensack. I can hear the loss of his friend in his writing. That makes me like him too.

I also like mysteries by a guy named George Pelecanos. He lives in Takoma Park or Silver Spring and all of his stories take place in Washington, DC. It is fun to read in a book all of the places that you see every day. He also likes the same kind of music I do, and also I love seeing him mention in his books the music that I like. I sent him an XM radio years ago and sure enough XM popped up in his last book. That felt great.

The first Harlan Coben book I read was called Darkest Fear. I think I bought it at an airport because I was looking at a whole row of books and chose his because I thought that his name was interesting. I figured it was some strange misspelling of "Cohen."



Naturally, the book was about a kid who needed a bone marrow transplant. I remember being in an airport reading it and just being blown away when I read that this kid had Fanconi amemia. As I read I kept saying to myself, "this isn't right," and "that's not right." I knew too much. That is a mystery title, "The Man Who Knew Too Much."

So of course I tracked down Mr. Coben's email address and wrote him. I think that I said to him that I thought it was great that he wrote about FA. Before Molly, no-one had ever heard about FA - even though it was a kid who had FA who received the first cord blood transplant ever - and it is important that more people know about it so we can get more money for research and find a cure.

I do remember asking him if he could make a contribution to the Fanconi Anemia Research Fund. I thought about that a few weeks ago when I was talking to Molly's mom who said she asked the same thing of Jodi Picoult, who wrote the book "Sister's Keeper," which is a story about a little girl who needs a transplant.

Back to the book I just finished, "The Innocent." It was a good book, and there was one part that I found personally interesting.



If you click on this you can read it.


(click to read)

I think about this myself. I think that Harlan Coben is really sensitive to it because of his friend's death.

This is what he wrote about his friend's son.

On December 10, 2005, a little more than a year after the plane crash, Jesse Miller was called to the Torah for his bar-mitzvah. Looking up at him from my seat with the congregation, I saw Steve, of course. But as his beautiful son ended the service by singing Imagine by John Lennon, I realized something simple and profound.

I love Jesse.

I have everyone's pictures that they sent us during December. I have them in a pile because I have wanted to scan them in and put them on here so you can see how everyone is growing up.

We don't send one out.

"Wiz" kid
A rare disease couldn't keep Molly Nash from being born for the stage
By John Moore
Denver Post Theater Critic

When little Molly Nash recently auditioned for "The Wiz," she belted out her favorite song as if her life depended on it. At one time, it did.

"Five hundred twenty-five thousand six hundred minutes: How do you measure a year in the life?"

For the Nash family, nothing measures the year following Molly's landmark, life-saving blood transfusion in 2000 like the theme song from "Rent."

"What that song means to me is that when I was really sick and in the hospital, my parents were counting every minute and every second we had together," said Molly, who turned 12 on July 4.

Molly's parents are Jack and Lisa Nash of Greenwood Village, who set medical history by the way they saved their daughter's life six years ago. Then they had to wait out another 525,600 agonizing minutes of recovery in a sterile isolation unit before learning that Molly would, indeed, survive.

"Time goes on for the world, but time stood still for us," said Lisa. "They say if you can make it through that first year, then you have a chance. But kids were dying all over that transplant unit. So 525,600 minutes? Yeah. I can tell you every single minute of that year."

Molly was born with Fanconi anemia, a rare and deadly genetic disease that prevented her from creating healthy bone marrow, which led to the onset of leukemia. By age 6, Molly lay near death. Her last best chance for survival was infused stem cells from the placenta of a nonexistent sibling.

The Nashes always wanted more kids but had feared passing on the disease to more children. Even if they were to conceive naturally now, the odds were 1 in 4 the child would have the Fanconi gene, and it would be four months before they would know for sure.

That was time Molly might not have, so they underwent selective genetic testing and in-vitro fertilization to produce a healthy match. After the seventh attempt, brother Adam was born, and Molly was saved. Three years layer, sister Delaine joined the growing brood.

"When Molly went to transplant, she didn't have much time left," Lisa said. "At Adam's circumcision, she was gray, and she had to be carried down the aisle of the synagogue because she could not walk."

The use of umbilical-cord blood to save a life was not new. But Adam is believed to be the first donor ever selected and cleared while still an embryo. Because of the worldwide attention that followed, perhaps it's no surprise that Molly now says, "I was born for the stage." She's been on a worldwide stage of sorts her entire life.

Adam to the rescue

Five-year-old Adam bounds down the stairs of the Nash home and into your lap enthusing, "Guess who made Molly healthy?"' Then he flashes a small framed picture of himself.

"I'm guessing it's ... Adam?"

"It's me!" the boy says with glee. "I gave her the blood that I didn't need!"

His mom says, "Adam, if you were a peacock, your feathers would be out to here." Within seconds he's entirely refocused on his "Monster Garage" video. Ah, 5-year-olds.

Molly was sick and Adam helped make her better: That's the sum total of what her children know, Lisa said. Otherwise, their sibling rivalry and revelry are textbook typical.

"She's the best sister in the whole world," Adam says almost too sweetly. But Molly knows the score. "He's good," she says, "but he can be annoying. He pulled my hair this morning."

In time, the pair will learn what all those boxes of press clippings in the basement are all about. They tell the story of a quiet young couple thrust into a worldwide spotlight for choosing to use existing technology to save their child's life.

When Molly was 6, Pre-implementation Genetic Diagnosis (PGD) was more science fiction than science to the Nashes. In it they saw not controversy, only hope - the birth of a second child would more than triple Molly's chances of survival.

Lisa has heard all the arguments about playing God with genetics, but she defies any parent to not try the same thing in her position. "I just say don't judge anybody until you've been standing in their shoes."

After six failed in-vitro attempts, Lisa's shoes were quaking with fear. With Molly's time growing short, her doctor advised taking their greatly reduced chances on a nonrelated

Molly Nash, right, is seen during dress rehearsal at the Space Theatre at the Denver Performing Arts Complex. She plays one of four Munchkins. (Post / Helen H. Richardson)

donor. But with so many kids dying on that route, Lisa opted for one last in-vitro try. Time was of the essence, and the stakes could not have been higher.

"When you go to Vegas, you know you are going to lose money. That's gambling," Lisa said. "Here we were gambling with her life. And it wasn't a few hundred bucks we would be losing. We would be losing our kids."

Lisa was told she was pregnant on Christmas Eve, but she didn't believe it. "I told the nurse, 'You just don't want to hurt me because I'll have a rotten Christmas Eve, but it's OK because I'm Jewish,"' she said.

Still not convinced, Lisa wrapped Molly like a mummy and drove to Target, where five pregnancy tests confirmed it. "I'm watching it turn positive, one after the other, and I'm screaming in the stall," Lisa said.

"You laugh," Jack added. "I still have to live with these things."

He's not kidding. "I still have those pregnancy tests up in my closet," Lisa said.

Little did the family know, though, that their private godsend would soon become a public moral debate. After Adam's birth, photographers climbed trees outside the University of Minnesota Hospital to get pictures of the kids in the transplant room. The Nashes received a letter from the Vatican excommunicating them from the Catholic Church. "I mean, does that really mean anything ... when you're Jewish?" Lisa can now say with a laugh.

"When Jack and I were making this decision, we didn't do it for the world's approval. It was to save our family. More than that, it was to have a family, a healthy family. And then the world decided they were going to take issue with what we did?"

Jack, the general manager of the Hampton Inn and Suites, said while "we obviously used the technology to save Molly, the real reason was so we could have other kids."

As for the religious debate over stem-cell harvesting, Lisa emphasizes that Adam was never needled in any way. "After he was born, they took blood from his placenta, which they usually throw out," she said. Added Jack: "We should have gotten a rebate because we recycled!"



One happy munchkin

When Adam says, "My sister is a blue-haired munchkin," he's not being a bratty brother. Molly is playing just that in "The Wiz" for the esteemed handicapped theater group called PHAMALy.

"When I found out I got in, I screamed my head off," she said. "I was so happy."

PHAMALy enables people with disabilities to perform in a professional annual summer musical at the Denver Performing Arts Complex.

"These people have all been through so much," said Lisa. "They have been through car accidents and Parkinson's and leukemia and bone-marrow transplants. They all deserve happy times. Well, these are the happy times. They all deserve to shine and to have their moment."

Molly has sat in PHAMALy's audience the past four years, wanting nothing more than to be on stage with them. "I think it's really neat," she says, "because I finally get to do something."

Lisa says Molly has always thought of herself as a little different, "but she's no longer different here," she said. "Nobody is. Yes, they have physical challenges. But among them here, they are all whole. And they are all perfect."

To notice what's wrong with Molly, you first have to get past that sweet toothy smile and that cackling laugh. It's that laugh, and her compartmentalized size, that got Molly cast as a munchkin in the first place.

With Molly wriggling in her lap, Lisa counts off five birth defects before she even leaves Molly's head. In all, she has "close to 20 birth defects," Lisa says. "That's all I can think of today."

Molly asks, "What are birth defects?"

"They are the things that make you special," her mom says. But unlike leukemia, they are nothing this family can't live with.

Molly was just 2 when a neighbor kid let her tag along at a dance class taught by PHAMALy choreographer Debbie Stark.

"In walks this precious girl wearing a mask that covered her entire face," said Stark. "She came in the door and announced, 'I'm here today.' I fell in love right then and there. That became the motto for her whole life: 'I'm here today."'

Because Molly was susceptible to infection,




The entire Nash family sits together in the family living room. They are, from left: Adam, Lisa, Delaine, Jack and Molly. (Post / Helen H. Richardson)

she could not take classes with other kids. So Stark would lock up her studio, and the two would dance there together for hours. Four years later, Stark became Adam's godmother. She still takes Molly to see theater all over town. Molly especially loves the Country Dinner Playhouse, where she saw "Grease" six times and developed a crush on a boy "who turned out to be a poophead."

Ever since Molly was born, she says, "My dream was to do a show with Debbie." And so with "The Wiz," "now I got my dream come true." The night before, the company had a 12-hour rehearsal that ended at 11 p.m. Everyone was exhausted - but not Molly. She said to Stark, "Do we really have to leave now?"

The theater community hosted a benefit in 2000 called "A Moment for Molly," where she was presented a silver-balled necklace that belonged to 'N Sync's Chris Kirkpatrick. Months before, "Buzz" Reifman, Denver's "doctor to the stars," arranged for Molly to meet her idols backstage at a concert.

Kirkpatrick said, "I like your pony tail," and Molly said back, "I like your necklace." Kirkpatrick moved Molly's family to the front row, and he sang "God Must Have Spent a Little More Time on You" directly to her. "Some girls in back of us thought he was singing to them, but he said, no, he was singing to me," Molly beamed.

Kirkpatrick sent a recorded message to Molly's benefit. When he said, "I have a little present for you," Reifman produced the necklace Molly had so admired. She's since been offered $10,000 for it, but Molly's not selling it - "not ever."

An uncertain future

Molly's prognosis is unclear, because there are only about 300 people in the world with Fanconi. What her parents do know is that she is extremely susceptible to several cancers.

They also know that Molly's transfusion bought them time. Time for her to meet her brother and sister. To develop mad crushes on boys and a passion for dance. To find a cure for cancer. Time to soon become a teenager, something that seemed impossible at birth, when doctors predicted she would die by 7.



"There was a really strong possibility that there was never going to be an Adam, and there was a chance that, God forbid, there was never going to be a Molly beyond a certain age," Lisa said. "But through this technology, we have a family. And our kids are going to all grow up together, and they are going to outlive me. So it's a miracle.

"Yes, it stinks that Molly was born with a disease, but I don't think of it as a punishment because God gave me my Molly - for good and for bad, and for her challenges. And I wouldn't have switched her for any other baby."

"Thank you momma," Molly says before giggling like a blue-haired munchkin.

Theater critic John Moore can be reached at 303-820-1056 or jmoore@denverpost.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

Here is another picture of you and Molly from the day we left. Looks like you were a little more into it in this shot. Wonder why you were raising your hand. Maybe I asked, "Who doesn't want to have their picture taken?"

Guess who we saw last night. The Nashes came into town for a few hours. They were on their way to Camp Sunshine. Remember Camp Sunshine? It was the Camp up in Maine where we went with all of the other Fanconi anemia families. They had fun things for the kids to do and the parents got to meet with all of the doctors.

It was great to see Lisa, Jack, Adam, Delaney and especially Molly. We had dinner and then they had to rush back to the airport. I gave Molly a big hug (and a Hope for Henry wristband, which she was very psyched about) and told her that she is very special to us. She is.

When I talked to her I felt like I was talking to you. She is really grown up for eleven years old. She has been through so much. But she looks good and sounds good. She went to sleep away camp this summer. Can you believe it. How great is that.

I didn't want the hug to end.

This is a picture of all of us at the hospital in Minnesota the day we left. Molly still had a way to go but we were all done with the transplant. Or at least that is what we were hoping.

I think you weren't much in the mood for photos.



This picture of you and Molly was made from two different photos pieced together.



This was the whole crew last night. As you can see, Adam has grown up into a big boy. And both Joe and Delaney are part of our families. They had not been born yet when you and Molly were getting your transplants.



Although it was awesome seeing everyone, it is also very sad. Nothing could remind us more that what we did to save your life didn't work. The fact that you are not in the photo is killing me.

I think I told you how when I get sad it feels like I have the wind knocked out of me. You had the wind knocked out of you that time you were a teacher's helper at the Gan. They called the rescue squad for you. I kinda wish there was some kind of rescue squad for how I feel.

This article talks about your friend Molly. It says that because of Fanconi anemia she would not live to see her 8th birthday. They used to tell us the same thing. Thankfully, Molly is alive and okay.

Today would have been your 9th birthday. I think they should have said because of Fanconi anemia you would not live to see your 8th birthday, and 9th and 10th and 11th and 12th and 13th. Just saying one of them doesn't really bring home the reality of it all.



Procedure opens window of hope
By JENNI LAIDMAN
Blade Science Writer

October 25, 2004

The box felt empty.
Still, its presence on the floor of the backseat weighed on Jennifer and Joe Makhlouf with the heft of a planet.

The Lambertville couple drove to Chicago with this strange little container in their care. They could hardly bear to touch it.

Inside the lunchbox-sized incubator were two tiny embryos.

Since the 1980s, researchers have sought a way to predict the genetic health of embryos before they're put in a woman's womb.

The Makhloufs are among hundreds of couples taking advantage of testing that they hoped would save them the grief of another miscarriage.

But the technique, called preimplantation genetic diagnosis, or PGD, is fraught with controversy. Some criticize its accuracy. Some worry about what happens when one or two cells of an eight-cell embryo are removed for analysis. And others worry about the morality of choosing a child based on the genes he possesses.

For the Makhloufs, the question was simple: were these embryos even sound enough to survive? But the technique has far more ethically complicated applications. Parents can select an infant's sex. They can screen out embryos with genetic childhood disease. They can select babies who won't develop ailments that occur far into adulthood, such as Huntington's disease or some forms of Alzheimer's. They can even use it to select an infant to save the life of another child.

That's what Lisa and Jack Nash did. In 1999, the Denver couple's little girl Molly was dying of a rare genetic disease called Fanconi anemia. Without a stem-cell transplant from a matching donor, Molly's chances were slim.

"There was this gorgeous little baby, and they were telling us" she had the worst type of Fanconi, Lisa Nash said. Her bone marrow, with all its blood-making capabilities, would fail. Doctors said Molly wouldn't live to see her 8th birthday.

"In the back of my mind I'm thinking, yeah. Right. I don't care what I have to do, or where I have to go, she's going to make it. She's going to be OK," Lisa said.

Molly was born without hip sockets. She had no thumbs. She had holes in her heart and was deaf in her left ear. Eating was difficult. She had to be tube fed. Surgeries corrected her hands. She had multiple stomach operations. But by age 3, her bone marrow was failing.

When the Nashes heard about preimplantation diagnosis, it was with a bright stab of hope. Here was the chance to pick an embryo without Fanconi - there was a 1 in 4 chance any child of theirs would be born with the disease - that would be a genetic match for their little girl.

A child who was an immune-match would be a baby saver. After its birth, its umbilical cord blood would be collected, and the stem cells within would be grown to create new bone marrow for Molly. But four IVF attempts in 12 months failed. Lisa Nash had two miscarriages. Other embryos carried Fanconi, or lacked the right genetic signature.

It seemed hopeless. Even their doctor counseled against a fifth attempt. But Lisa insisted. This time, Lisa's eggs made only three embryos. Two were bone marrow matches. One of those matches had Fanconi.

"So we have one. This is our last shot," she said.

She had the embryo put into her womb, and continued to watch Molly fail day by day. It didn't look good.

On Christmas Eve, 1999, the doctor's office called and told her she was pregnant. Lisa didn't believe it. She put Molly in the car and headed to the store.

"I bought five pregnancy tests, went into a stall on Christmas Eve and peed on all five sticks and watched them all turn positive."

She called the doctor's office back: "I'm pregnant!" she told the nurse.

But in her 7th week of pregnancy, it all seemed to unravel.

"I was in the shower and it looked like 'Psycho,'" Ms. Nash said.

She was covered in blood.

"I started praying. I was losing both my children. Molly was going to die and we had no time, and everything Molly wanted in the world" - her own life, a little brother - was slipping away.

The infant's placenta had torn. Lisa spent the rest of the pregnancy in bed.

In March, 2000 a bone-marrow biopsy showed Molly's cells were pre-leukemic. At the end of June, another biopsy revealed worse results. If Lisa would agree to deliver early, she could save Molly now.

"I said, 'Absolutely not.'"

In late August, "Adam was born with a scream that cracked the walls. It was the most beautiful sound I ever heard."

Doctors examined the newborn, collected Adam's cord blood, and gave Molly her new stem cells a month later.

Today, Molly is 10 years old and in fourth grade.

"She's doing perfect," Lisa said. She still has Fanconi, she still requires tube feeding, "But her blood and bone marrow are healthier than mine are, and there's nothing she cannot do if she puts her mind to it."

Adam, the baby who saved her, is a happy 4-year-old. A third baby born of IVF, Delanie, is 18 months.

The Nashes were the first people in the world to use preimplantation genetic diagnosis to save another child. They make no apologies for their oft-criticized decision.

"Until they've been where I've been, and watched their child die slowly, day by day by day … until they've walked in my shoes, they'll never know what they would do. If you don't believe in it, don't do it. But don't judge me," Lisa said.

The process didn't hurt Adam at all.

"He was sort of like the pot of gold at the end of the rainbow," she said. "We had Adam so we could have Adam. The fact that he could help keep his sister here was sort of icing on the cake."

For Joe and Jennifer Makhlouf, using preimplantation genetic diagnosis was a simpler matter.

The couple tried for three years to have a child before turn

ing to fertility treatment. A year of fertility drugs didn't help.

"All of my friends were having their first babies. My sister had just gotten pregnant with twins. His brother's wife just got pregnant. Everybody was pregnant but us," Jennifer said. The couple was heartsick.

So they turned to in vitro fertilization. It wasn't a simple choice. They are Catholic. The church opposes assisted reproduction.

Not all Catholic couples take this prohibition as seriously as the Makhloufs. But they were torn between their ache for a baby and their strong loyalty to their church. They sought counsel from a priest.

Pray about it, the priest said. Look for God's guidance.

They decided to go forward.

"It's in God's hands," Joe said. "God is guiding the surgeon's hands." But they made one promise to themselves: no embryo would be destroyed in their effort to have children.

Their first in vitro attempt failed. A second attempt brought a pregnancy, but their elation died with a miscarriage.

To determine why this healthy young couple could not carry a pregnancy to term, Dr. F. Nicholas Shamma, with IVF Michigan, which includes Toledo Fertility Center in Sylvania, sent them for genetic testing.

The test revealed a problem in Jennifer's chromosomes. One had a tendency to invert. The flaw killed embryos.

That's when Dr. Shamma suggested preimplantation genetic diagnosis. The couple's embryos would be screened, and only the ones capable of surviving a pregnancy would be returned to Jennifer Makhlouf.

The Reproductive Genetics Institute was closed when the Jennifer and Joe finally arrived in Chicago. They rang a doorbell. A man in a white coat met them at the door, took the little incubator from their hands, and walked away. Now, the waiting began.

Without PGD, couples learn of fetal defects only after a pregnancy is established. At that point, they can decide to abort, or prepare themselves for the special needs of their new baby.

It appears a growing number of couples abort.

There is little data on the subject, but one study by the U.S. Centers for Disease Control and Prevention published in 1994 shows an unexplained decline in the number of children born with Down syndrome to mothers 35 years and older. This is the age group with the highest incidence of Down syndrome babies, and also the one most likely to be offered prenatal testing for the chromosomal abnormality.

In this CDC study of 17 states, the number of Down syndrome babies dropped 29 percent, from 36.6 per 10,000 births in 1983 to 25.9 per 10,000 in 1990.

Other couples who carry genetic diseases often decide to forgo pregnancy rather than risk cystic fibrosis or sickle-cell anemia. PGD would allow them to make sure an embryo is free of such diseases.

Use of the technique increases as researchers develop more probes for specific diseases.

But some have grave ethical concerns about the practice.

Wesley J. Smith calls PGD "really dangerous," because of the kinds of selection it could, some day, permit. Mr. Smith is a lawyer and senior fellow at the conservative Seattle think tank, the Discovery Institute.

"What if they found homosexuality was genetically based?" he asked. "How many of those embryos do you think would make it to being born?"

He notes one survey that found 11 percent of respondents would abort a child that carried a genetic propensity to obesity.

But such concerns are premature. Most human behavior is the result of complicated interactions among many genes and the environment. Science has not identified the genes that make us intelligent, or antisocial, or simply taller.

But there are screens for some adult diseases that could have serious consequences, he said.

"What might have happened in past, if we were able to really genetically judge our children?" he asked.

"Some of the most powerful contributors to human welfare were people who had to go through significant difficulties," Mr. Smith said.

Abraham Lincoln was prone to depression, Mr. Smith said. Other great leaders struggled with alcoholism. Physicist Stephen Hawking has amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. And what about Lou Gehrig himself?

Would the "This Land Is Your Land," have ever been written had Woody Guthrie's parents known he would die of Huntington's disease at 55?

Selection of embryos to avoid adult diseases is not about the child being created, Mr. Smith said, "but about us. We don't want to deal with it." These are choices that may take "away the best of us."

One of the more controversial uses of PGD is for sex selection.

The American Society of Reproductive Medicine, which represents most U.S. fertility doctors, recommends PGD for sex selection only to prevent sex-linked diseases.

But ASRM's position hasn't stopped fertility specialists from a broader use of sex selection. A few clinics advertise the availability of sex selection, and IVF Michigan, which includes the Toledo Fertility Center in Sylvania, allows it if, for instance, a family has three sons and wants a daughter, a practice called family balancing.

But Yury Verlinsky, director of the Chicago reproductive laboratory to which the Makhloufs took their precious embryos, said that a couple doesn't have to tell him they're doing sex selection. The embryos' sex is part of the report. Parents simply can chose without getting anyone's permission.

A few clinics offer PGD routinely. Mr. Verlinsky's lab has performed PGD on about 5,000 embryos that led to the births of 600 babies, he said. He believes the procedure reduces miscarriage rates among IVF patients from 80 percent to 15 percent. Mr. Verlinsky says this data will be presented at a conference soon. It is not published in a scientific journal.

"We offer it for 100 percent of our patients. We suggest it for everyone who goes through IVF," he said.

His clinic is unusual in its total advocacy for PGD. Joseph Karnitis of the Toledo Hospital Fertility Clinic advocates PGD only for patients with a history of specific genetic conditions.

The Toledo Hospital does not do the work itself, but refers the patients to other fertility laboratories.

But Dr. J. Ricardo Loret de Mola of the MacDonald Fertility & IVF Program, part of University Hospitals Health System in Cleveland, says there's little clear evidence that preimplantation genetic diagnosis improves pregnancy rates.

"The data is actually controversial," he said, and he worries the technique could harm normal embryos.

"It's a procedure that's never been studied, really, in longitudinal data. You have to digest a hole on the embryo. You expose the embryo to chemicals. You can do it with laser, but you're exposing the embryo to heat, heat that normally wouldn't be there. You have to extract one or two cells out."

Further, the technique is not a perfect predictor, Dr. Loret de Mola said.

"We think of this technology as foolproof. It is not foolproof. We really do not understand how the embryo works," he said.

When Jennifer and Joe Makhlouf dropped off their two embryos at the Reproductive Genetics Institute in Chicago, they just wanted to know if they could have a baby.

They tried to relax, spending a Saturday in Chicago shopping and visiting friends. But those two tiny embryos never were far from their mind.

"To tell you the truth, that whole week was just excruciating," Joe said, "just to await the outcome of our two precious embryos."

The laboratory promised to call the couple at noon on Sunday. The Makhloufs paced their cramped hotel room, seldom glancing out the single window into the snowy streets. Around 1:30, the phone rang.

The embryos were both normal. And they were both boys.

The couple went straight to the lab to retrieve the small incubator. Another nerve-wracking drive, this time through heavy traffic, brought them back to Michigan IVF after dark. A doctor met them in the parking lot. He took the box, and the Makhloufs went home for a restless night's sleep.

The next morning, they were at the clinic before 9. In the two days since they left for Chicago, the embryos had grown to 100 cells. Doctors carefully returned them to their mother's womb. Everyone held their breath.

Today, their son, Anthony is nearly a year old. He sits on dad's lap, giving his guests intensely focused scrutiny before looking for something more interesting.

"We go to bed every night and our last words to each other before we go to sleep are about how cute Anthony is," Jennifer said.

"The day after I delivered him, I was going down the hall to get a drink. I heard all the other babies in the ward crying, and I came back and said, 'Joe, our baby cries the cutest.'"

Lisa wrote a story about a boy named Thomas that appeared in the magazine where she once wrote a story about you and Molly.



It was a really wonderful story. I started to cry when she told how Thomas' daddy taught his class about the disease that Thomas has called Cerebal Palsy. I didn't stop until well after I finished reading it.

Thomas and his Mommy and Daddy are all very special people. We are all lucky to have Lisa tell our stories.

Molly and her family were on TV this morning. Molly looks so good and so grown up. Adam is very handsome. I saw pictures of them back in June when I saw Jack and Lisa in Chicago.

http://mms.tveyes.com/ExpandGuest.asp?ln=51179

This is a picture we took the day we left Minnesota. We were over at the clinic getting checked out and then walked over to see the Nash's who were on the transplant floor for some reason.





I remember being more hopeful than worried. I thought it was a good sign that you and Molly were out walking around amongst the people. As you can see, you were not too enthusiastic about having your picture taken.