1st April 2008

I had a 'saviour sibling' to cure my desperately ill son - but now I've found out my newborn daughter can't save his life
By HELEN WEATHERS

Donna Zammit's first, tearful words to her husband Thomas after their baby daughter was born six weeks ago were: "I did this for Jamie."

Strange words, but then baby Donatella was conceived with the primary intention of her becoming a "saviour sibling" to her nine-year-old brother Jamie, who suffers from the rare genetic blood disorder Fanconi anaemia.

Their unbridled optimism that Donatella might provide their son with a bone marrow transplant and in doing so save his life has been cruelly short-lived.

Two weeks ago the Zammits received the devastating phone call from Great Ormond Street hospital in London to say that tests on Donatella's umbilical cord blood had revealed she was not a perfect tissue match for her brother.

She will not save Jamie's life and although Donna and Thomas say they love Donatella just the same, inevitably her birth has been tinged with disappointment.

Mother-of-five Donna, 36, still hasn't broken the devastating news to Jamie, who is already struggling to cope with the physical and emotional effects of the disease, for fear it will emotionally crush him.

She doesn't regret having Donatella, but in her darker moments she questions the wisdom of raising her son's hopes by telling him, before she fell pregnant, she was going to try for a "saviour sibling".

"The time just never seems to be right to tell him," says Donna, a former advertising PA who lives with Thomas, 33, a shop manager in Bromley, Kent.

"The hospital keeps asking me: 'Have you told Jamie yet?' but I don't want to upset him.

"I felt such a failure when we found out that Donatella was not a perfect match, because we'd been so hopeful and quietly optimistic.

"When I first told Jamie I was going to try for a baby to help save his life, his reaction was: 'That's great, mum.'

"He was so sweet and caring when I was pregnant with Donatella and since her birth

"He loves holding his little sister in his arms, stroking her head and kissing her little fingers, and I keep thinking: 'Will he feel the same way about her when he knows she can't help him?'"



And it is this pertinent question which goes to the heart of the controversial ethical debate about "saviour siblings" or, more brutally, "spare part" babies.

To what extent are Jamie's feelings towards his sister coloured by the knowledge she was conceived in the hope of saving his life? Will he end up resenting her for not being able to do so?

And how will Donatella feel, growing up knowing she might not have existed had her brother not needed a bone marrow transplant?

Will she feel as much a failure as her mother, for failing in this one vital respect, and believe herself to have let down both her parents and her brother?

Children diagnosed with Fanconi anaemia, or FA, are generally not expected to survive beyond their teens or early 20s, and if no bone marrow donor is found, will Donatella feel the burden of guilt fall on her small shoulders?

These are tough questions that Donna and Thomas admit have exercised their thoughts daily.

The truth is, they don't know if what they tried to do was right or wrong, they are simply desperate to save Jamie's life.

"I love Donatella as much as my other children. I love her for herself and not for what she might have been able to do for her brother, so while there is a disappointment, I am not disappointed with her," says Donna.

"I don't know if what I tried to do was right or wrong, but until people have stepped into my shoes and lived with the reality of having a very sick child, they have no right to judge.

"As a mother I feel I have a duty to try to do everything I can to try to save my son's life and I believe any mother in the same situation would feel the same way."

Britain's first saviour sibling was born in June 2003 to a couple who were desperate to cure their young son of a rare form of anaemia.

Jamie Whitaker was genetically matched as an IVF embryo to his brother Charlie, who was four years old at the time.

His parents Jayson, 37, and Michelle, 35, from Derbyshire, travelled to Chicago for the specialised treatment - which was a success - after being refused permission to select a tissue-matched embryo by Britain's Human Fertilisation And Embryology Authority.

In July 2004 the HFEA became the first in the world to officially sanction the practice, saying such treatment could benefit the whole family, and in April 2005 the House of Lords ruled that the creation of designer babies to treat brothers and sisters with life-threatening disorders was lawful.



This followed their upholding of a 2003 High Court judgment which granted a couple from Leeds, Raj and Shahana Hashmi, the right to use controversial fertility treatment to select an embryo which could help save the life of their son Zain, then aged six, born with a fatal genetic blood disorder.

Mrs Hashmi, now 43, had a series of unsuccessful attempts at IVF, failing either through miscarriage or because an embryo with the right tissue group was not produced.

In January the House of Lords further approved proposals in the Human Fertilisation and Embryology Bill - which recently sparked a furious row between politicians and the Catholic Church - allowing parents to use saviour siblings to treat serious and potentially life-threatening ailments.

These could include conditions such as sickle cell anaemia, renal failure, kidney disease and spinal diseases.

Needless to say, Donna supports the bill wholeheartedly despite the uncomfortable issues it has thrown up in her family.

She does not intend to use IVF in a further attempt to save her son's life, by conceiving a designer baby as opposed to relying on nature.

"I have five children, one with Fanconi anaemia, and I think to have another would put too much strain on my health - I want to be around to help Jamie," she says. "Our only hope is a bone marrow transplant from a donor."

Donna says she would have loved the opportunity to have IVF - virtually guaranteeing a perfect match for her son - but received negative replies from almost every clinic she approached before she fell pregnant with Donatella, on ethical grounds.

With, campaigners and Catholic Church leaders argue, good reason.

Is it ethical to deny a child the choice over how its body is used? Could that child then be called upon to provide further "spare parts" against its will?

Church leaders are demanding the Government allow MPs a free vote on the bill, based on conscience, and have decried the creation of designer babies, and the destruction of embryos rejected purely because they do not match the tissue of an existing ill sibling.

Surely this must trouble Donna's conscience?

"It took me a year-and-a-half to decide to have a fifth baby," says Donna, whose other sons Tommy, 11, Roberto, five, and Lorenzo, four, are perfectly healthy.

"Great Ormond Street hospital made some approaches to fertility clinics but everything was moving so slowly I decided to have a baby naturally.

"It was absolutely nerve-racking and there were times when I felt like we were playing God. We knew there was a one-in-four chance this baby might also be born with FA and that was a huge risk to take," says Donna, who along with Thomas is a carrier of the disease.

"I didn't know that I would be able to cope with another ill child, and the first 12 weeks of the pregnancy, until tests showed that she didn't have it, were the worst of my life. I felt sick with worry.

"Had Donatella inherited FA I think I would probably have had a termination.

"I love children and I don't believe it's right to end a life, but knowing how Jamie has suffered I also believe it's not right to put a child through that either.

"If we'd been able to have IVF, we would have been able to select an embryo which would have given us some certainty.

"We would have been able to tell Jamie he could have a bone marrow transplant instead of just hoping for it."

Jamie was six years old when Donna and Thomas first started to worry about his health. Always small for his age, he grew increasingly pale, lethargic and breathless after starting school.

Then living in Malta, where Thomas was born, Donna took Jamie to the hospital where tests revealed he had a red cell count of just 3.8, compared with a normal reading of 15 or 16.

Doctors suspected leukaemia, and because they did not have the facilities to investigate further, he was referred to Great Ormond Street hospital.

He went through a battery of tests and was diagnosed with FA in April 2005.

"When they told us Jamie had Fanconi anaemia I didn't know what they were talking about because I'd never even heard of it," says Donna.

"But I knew it was serious when they said his only hope was a bone marrow transplant. We were stunned, and my immediate fear was that our other sons had it too.

"They were all tested and the two weeks we had to wait for the results were the worst of my life.

"I kept looking at them, thinking: 'Have you got it, too?' I kept looking for signs I'd read on the internet and had started to convince myself they had them.

"When Great Ormond Street phoned up and said: 'Good news, Donna, your other sons don't have it,' I collapsed with relief.

"But poor Jamie would say: 'Why me and not my brothers?' He couldn't understand why he was the only one to have this disease.

"I explained to him that we, as parents, had no idea that we carried this disease until he was born and that there was nothing we could have done to prevent it.

"I told him that there are some things in life that we have no control over, but he was only six and to him it just seemed unfair.

"But I'm the kind of person who tries to face things head on and stay positive, so I thought: 'Right, we are going to find a donor and everything is going to be all right.' I was determined to do everything to help our son."

When Donna and Thomas started to research the disease, however, their spirits sank. FA is so rare that it is believed to affect only one in six-and-a-half million people. The number of carriers is between one per 100 and one per 300 of the population.

There are ten families in Britain with children who have the inherited disease, which affects the production of red blood cells, leading to aplastic anaemia.

This is accompanied by a whole host of other medical issues including skeletal problems, small head circumference, short stature, growth and development problems and misshapen or missing thumbs.

People with FA are also more susceptible to developing cancers, such as leukaemia, and organ tumours, and have compromised immunity to common ailments such as colds and infections.

Without a bone marrow transplant, the only treatment for Jamie is monthly blood transfusions or the steroid treatment oxymetholone, which raises the red blood count but has the side effect of bringing on early puberty.

"Jamie was diagnosed in April 2005 and we felt really confident that a bone marrow donor would be found," says Donna.

"Our other sons were tested, in the hope that one of them was a perfect match, but none of them were.

"That Christmas we were elated when Great Ormond Street hospital told us they'd found a female donor who was a nine out of ten tissue match.

"But our world caved in when they explained they would only use this donor as a last resort, if Jamie's condition really deteriorated, because he's in such a fragile state he needs a ten out of ten match for the operation to have a real chance of success.

"Even with a ten out of ten match the survival rate is 80 per cent, because before a transplant operation you have to undergo chemotherapy to dampen down the immune system, and for FA patients chemotherapy is especially toxic.

"So we've been searching for another donor but because Jamie has such a rare tissue type, it's been really hard.

When the staff at Great Ormond Street first mentioned that having another baby might provide a perfect match, my first reaction was to say: 'No way.'

"I felt I had enough to cope with, with four young boys and one who was very ill. It was just too much for me to take in.

"I talked it over with Thomas and he was keen for us to try, but it was me who was going to have to carry the baby and live with the fear that the new baby might also have FA."

What changed Donna's mind was the profound psychological effect FA was having on Jamie, who - as he grew older and understood more about the condition - became prone to depression.

"The drug therapy has also hastened the wild mood swings associated with puberty.

"Although Jamie goes to a mainstream primary school, he can't do all the things the other boys do, so he feels very isolated," says Donna.

"He bruises like a peach and even the slightest graze could lead to a serious infection.

"The steroid treatment has brought on early puberty and all his friends at school keep asking: 'Why has Jamie got such big muscles?' and 'Why is he growing a moustache?' He doesn't like being different from everyone else.

"He has become very easily upset and confrontational at home. Recently he ran upstairs saying: 'I wish I was dead, I wish I had never been born,' and I didn't know how to comfort him.

"All we can do is try to stay positive, make sure he feels loved and distract him with fun activities.

"He won't even talk about his condition now and whenever the hospital or haematologist phones up with the latest blood test results he'll say: 'I don't want to know,' before running off to his room.

"I love all my children equally and treat them all the same, but what mother wouldn't want to do anything in their power to stop their child's suffering?

"That was why I decided to have another child. I'm one of seven children and I always wanted a big family, so I reasoned that maybe I was simply bringing forward the child I was always going to have.

"After my youngest son Lorenzo was born, I certainly never said: 'That's it, no more.'

"I was always open to the idea of more, but Jamie's situation made me think a bit harder. For me, it was a risk worth taking.

"When I became pregnant with Donatella, all the staff at the hospital were so excited for us.

"They care so much for Jamie and I think everyone really thought that this baby would be a perfect match.

"There was a one in four chance of that happening and having had three sons who weren't a match, I thought: 'Surely this one must be?'

"Every time I went to the hospital the nurses would ask: 'When's the baby due?' which made it even worse when I had to tell them that Donatella was not a match and that we were still looking for a bone marrow donor."

A much loved and wanted sibling Donatella may be, but she is not the saviour they all hoped for. How this will affect the dynamic of the family, only time will tell.

Your cousins, Michael, Josh, Rachel, Noah, Emma and Sam, went skiing last week in Utah for their spring break. Jack and Joe aren't off from school until Pesach, which is in about two weeks. Not exactly sure what they're going to do, but I know Utah isn't in their immediate future.

Here is a movie that Uncle Andy sent us yesterday. Check out Michael catching some air. He is really talented.



Michael and Rachel's B'nai Mitzvah is coming up fast. More on that soon.

Here are some of my notes. I am a little too tired to get it done tonight, but will write you about everything soon.



I will explain one of the notes right now. The other day at Purim services, Joe's friend Andrew told me he had a sleepover at Allison's house. I told you that Allison is Joe's girlfriend.

In the car I said to Joe that he needs to have a sleepover with Allison. He has said for a long time that he wanted to do this. I explained to him that it was my fault, the I had "dropped the ball."

Joe then asked, "what ball."

I have so much to tell you. I have been leaving myself notes and I need to write everything down. Last week was a huge Henry week because Mom went back to Minneapolis. Jack read a book that made him terribly sad - a lot of siblings died in it. I will get to it all tonight. I want to tell you about Maryland basketball (why the sports page is depressing), a concert we went to this weekend and how I was in Hackensack yesterday. Lots and lots and lots to share.

Thinking of you and loving you.

Reading the sports pages lately has been really depressing, but I didn't think I'd break down and cry this morning while getting ready to take the guys to the bus.

I read a story about this kid from Gaithersburg, Max Bass, who has leukemia. It is a really wonderful story. I couldn't help wondering why no-one has stepped forward to get Max and his Dad tickets to the game, though.





For Guard and His Fan, Strength in a Number

By Steve Yanda
Special to The Washington Post
Wednesday, March 26, 2008; E01

OMAHA -- Somewhere among the socks, shirts and toiletries Michael Flowers packed to take with him to the first and second rounds of the NCAA tournament is a No. 22 jersey. It is significantly smaller than the No. 22 jersey Flowers wears during games, the one with "Wisconsin" stitched across the front.

This one says "Kidball" and is one of Flowers's most prized possessions. Max Bass gave him that jersey last December, the night Flowers realized his definitions of words such as "courage" and "determination" were underdeveloped.

"I take it everywhere with me," Flowers said. "I have it here right now. It's not leaving my possession. It's something that I value, that I appreciate. It's a reminder to never take life for granted."

Max Bass looks up to Flowers because the Wisconsin guard represents everything that has defined the Gaithersburg child's life -- tribulation, perseverance, diligence, triumph. Michael wears No. 22, just like Max.

Flowers, though, says Max and his family have done more for his personal growth and maturity than he could ever dream of doing for them. When you discover you are the idol of a kindergartner who has battled leukemia since he was 2 1/2 , Flowers says, you grow up in a hurry.

Max's father, Adam, was the one who first put 22 and 22 together, and in the year since Max became enamored of his Badgers role model, several lives have changed. It started with Max and Michael's, sure, but the ripple effect of the pair's bond spread beyond a 5-year-old boy battling a deadly disease and a college basketball player searching for serenity.

Flowers "always checks up on Max, and we check up on him," Adam Bass said by phone late last week. "And obviously we watch every game."

* * *

Today was the first morning [Max] awoke early due to hunger. So at 5 am, Adam made Max his new favorite request: Macaroni & Cheese. Although his appetite has increased, Max is still a picky eater and now craves only starches and salt and nothing sweet.

March 23, 2005, journal post by Max's mother, Jamie, on the family's Web site at CaringBridge.org

Max Bass first saw someone else wearing his jersey number in early 2007, when his father, a Wisconsin alum, was watching a Badgers game on TV.

"Look, Dad, just like me," Max said. "Number 22."

Adam proceeded to tell his son about Michael Flowers, the hard-nosed Badgers guard who never lacked for energy or effort. When Max took interest in Michael, Adam thought about the basketball class in which Max was enrolled, about how proud Max was when he came from class one day with his very own No. 22 jersey.

All the medications Max was taking were robbing him of the strength he needed to shoot the ball. He watched his friends casually make shots and wondered why he couldn't do the same.

So, Adam told Max that if he worked as hard as Flowers, those baskets were sure to fall eventually.

The following week, before his basketball class, Max told Adam he was going to be just like Mike -- Flowers, that is. Soon after, Max was able to make baskets with ease.

Adam told the story on a Wisconsin basketball message board, where Flowers's family and friends first learned of Max. Soon after, Adam and Flowers began exchanging e-mails.

Max's schooling and treatments kept the Basses from attending any Wisconsin games last season, so this season, they were determined to give their son a chance to meet his hero. Max's mother, Jamie, is a Texas alumna, so a December trip to Austin for the Badgers game against the Longhorns was arranged.

After Flowers made a three-pointer to beat Texas, the Basses were crying as they made their way down to the court, where Adam approached a man wearing a No. 22 Wisconsin jersey. Ted Flowers was standing courtside with his sister, Angela Kier, waiting for his nephew -- her son -- to come out of the locker room.

"He thought I was Michael's father," Ted Flowers said. "He introduced himself and asked. I said no, but introduced him to Angie. Adam was crying and stuff, and I'm trying to figure out what's going on. Then he tells me the story."

Adam told Ted about his son, Max, and about the influence Michael had had on Max's life. He told about the leukemia, how difficult the past few years had been, how much better the future looked now. After Adam was done, he took Ted and Kier over to meet Jamie and Max. Ted could not get over how strong the kid looked.

"I had been going through some difficult times myself last year, and the courage and determination I found in Max has helped me," Ted said. "If he can deal with that, then what I'm dealing with is nothing by comparison."

Ted doesn't want to talk about his personal struggles. He says it was a difficult time in his life and wants to leave it at that.

His problems were compounded last August when he spent two weeks in a hospital after suffering a heart attack. Ted said he has a heart condition that made the situation more precarious.

Even after taking six weeks off from his job as a database administrator at a grocery wholesaler in Houston, Ted said he couldn't get over his pain, couldn't let go of his suffering.

"I was really down and depressed," Ted Flowers said. "Then I met the Bass family, and it was like, almost immediately I was lifted up out of it. I was able to take my circumstances, set them aside and not dwell about it as much."

* * *

The other night he woke up shaking, he vomited and spiked a fever so we took him to the hospital. They gave him some antibiotics, and we were able to return home because his blood counts were high enough. But last night, the hospital called back and said his blood culture from the other night was a growing a bacterial infection and that we need to bring him back in until they can identify the specific bacteria.

Oct. 15, 2005, online journal

post by Jamie Bass

Michael Flowers was more nervous the night before that game at Texas than he was before tip-off. He was riding the elevator at the team hotel, moments from meeting the fan he never expected.

The elevator door opened, and Flowers's eyes met Max's. Flowers smiled. Max smiled.

"Wow, Michael's so big, Dad," Max said.

For the next 25 minutes, Max asked Flowers every basketball-related question he could think of. Who's your favorite player? Can you dunk? How much do you really practice? Flowers kept smiling as he answered each query.

"Everything was just, you know, instant chemistry between me and Max," Flowers said. "I think that's something special when you first meet somebody but you feel like you've know them for quite a long time."

Before it was time to go, Max gave Flowers one of his No. 22 jerseys. Angela Kier, Flowers's mother, said her son, who took a two-week leave of absence just before the season for personal reasons, started taking back control of his life the night he met Max.

"I consider Max a guardian angel for Michael," Kier said. "For Max to come into Michael's life has helped him, and because it's helped Michael, it's helped the family. He was going through a lot, and it affected everybody because we're such a close family."

Kier said that six months ago she wouldn't have felt right burdening her son with her problems, but now, she finds herself going to Flowers for guidance and comfort.

During a nationally televised game against Indiana in Madison on Jan. 31, television cameras panned to Flowers just after Coach Bo Ryan had pulled him out of the game.

"There was Michael, beaming, huge smile," said Ted Flowers, who was watching from Houston. "My sister said she hadn't seen Michael smile like that in a long time."

Michael Flowers's coaches have noticed a difference in the senior guard, as well. Assistant coach Greg Gard said Flowers has always been a soft-spoken person whose self-assurance would often wane.

"One of the things that helped his confidence as much as anything on the floor was him realizing the impact he can have on other people and how much people look up to these guys as role models," Gard said. "I think that was huge for Mike, to get a firsthand affirmation the type of impact he can have."

* * *

Max's past 2 treatments have gone smoothly. His next appt. is this Friday (Dec. 21) and he is due for a spinal tap so it will be a long day. We have to go in around 10 am, but the spinal tap itself will not happen until noon, so that means no eating until like 1:30. The past few times, Adam has gotten up with Max in the middle of the night to feed him and that seems to help.

Dec. 17, 2007, online journal

post by Jamie Bass

The morning after his most recent spinal tap, the first thing Max wanted to do was watch the replay of the Badgers' first-round win over Cal State Fullerton. After that, he watched the tape from Wisconsin's win over Penn State that clinched a share of the Big Ten regular season title.

The doctors have told the Bass family that Max is doing so well, he might be able to stop his treatments altogether in May. At that point, they'll find out whether Max was being kept healthy by his own body or by the medication.

"That's the real challenge," Adam said.

The Basses have kept in contact with Michael and his family since meeting in December. Adam said he regularly exchanges e-mails with Michael, Ted and Angela.

In February, the Basses traveled to Madison to watch the Badgers take on Minnesota. Wisconsin won, improving to 2-0 with Max in attendance. After the game, Max got to go into the Badgers' locker room. Michael Flowers introduced Max to the players and coaches. Then the team included Max in a huddle that ended with, "One, two, three, Badgers!"

"Max talks about that to this day like it's the greatest thing that's ever happened to him," Adam said.

Friday, the third-seeded Badgers will take on 10th-seeded Davidson in the Midwest Region semifinals in Detroit. Adam said the Basses have every intention of attending that game, provided they can find tickets.

Michael Flowers's eyes light up when he talks about the possibility of seeing Max again. He said he never imagined a basketball player could have such an impact on a 5-year-old boy who lives half a continent away. He said he is now more conscious of how he presents himself in public.

"It came at the right time for Michael and maybe at the right time for Max, too," Kier said. "I don't know how much of an effect Michael has had on Max. You know, he's been that strength for Max in some ways, but Max has been way more of a strength for Michael than I could ever ask for."

Local boy gets hero's welcome

By Airan Scruby, Staff Writer
03/18/2008

A Pico Rivera boy receiving treatment in Minnesota for a rare illness and his brother were honored this week as a "Hero in the Making" by a pro sports team.

Gregory Ramsey and his younger brother, Christopher, received autographed basketballs, personalized jerseys and hearty applause from fans at a Minnesota Timberwolves game at the Target Center in Minneapolis on Monday.

"This is the first time they've been to a professional sporting event," father Darren Ramsey said. "Everything was a blur, it went so fast."

Ramsey said he and his wife, Mary, went with the boys to watch the Timberwolves warm up before the game and to meet with players. The family was then escorted to a special suite to watch the game against the Los Angeles Clippers.

Gregory Ramsey, 11, has been in Minnesota for more than three months battling Fanconi anemia, a rare disorder of the blood that causes a weakened immune system, susceptibility to heavy bruising and defective bone marrow. The disease, found mostly in children, can be fatal if left untreated.

Gregory received a life-saving bone marrow transplant in December at the University of Minnesota Children's Hospital and has undergone chemotherapy.

Gregory may be cleared to return home with his family this week, if test results show that the new marrow is growing and producing healthy cells, and if his body is free of infection.

It was partially because he is nearing the end of his treatment that he was chosen to attend the game, according to a Ronald McDonald House representative.

Josh Williams, manager of marketing and communications for the Ronald McDonald House where the Ramseys are staying, said the Timberwolves approached him about children who could be honored at the game on Monday night.

"Gregory's been through a lot and he's just completing his 100 days," Williams said. "Especially with them hopefully going back home soon."

Although he is improving, Gregory is still weak and had to wear a mask to protect from infection while he chatted with players and met team President Chris Wright. He also uses a wheelchair because of a hip biopsy that morning. Doctors removed a piece of bone for testing, so Gregory felt too sore to stand.

"He was pretty sore last night," Darren Ramsey said. "But the last couple of days, he's actually been feeling pretty good. And he was really into the game."

According to Timberwolves spokesman Matt Makovec, the team features a hero at every home game. Some are military heroes or volunteers, while others are fighting disease or other challenges.

After the first quarter, the boys were guided to the floor, where they were introduced over the loudspeakers.

For Gregory, being in front of the large crowd at the game was nerve wracking, but he said he liked watching the game from good seats and spending time with his family.

Christopher, 8, said he enjoyed the game and the chance to meet the players.

"I got to go on the field, and I got to shoot some hoops and we got to go to the suite that has lots of popcorn and cookies," Christopher said.

airan.scruby@sgvn.com
(562) 698-0955, Ext. 3029

Today is March 14, or 3/14, or "Pi Day" for math geeks and proud parents. Like last year, Jack competed at school against other students to see who could recite the most digits in Pi.

Jack won. Woo-hoo!

He recited, rapped, said the numbers of Pi out to 101 places, 3.14...



Your kid brother continues to blow me away. In addition to winning the Pi Day competition, he got a letter earlier in the week telling him that he is going to represent JPDS at the state finals of the National Geography Bee. He had to take a test to qualify. And if he wins that, and it is on April 4 - Mom's birthday, then he goes to the National competition at National Geographic.

Not only is Jack kicking butt with his smarts but he is also competing with the JPDS track team. They didn't have any of that when you were in school, but now there are basketball, kickball, baseball and track teams at school. Jack's event is the long jump.

I am incredibly proud of Jack. He is an amazing kid. You'd be impressed by what kind of person he is becoming.

Your littlest brother starts baseball on Sunday. Uncle Stinky is coaching again in Takoma Park. This is where Joe shines - though he isn't too shabby in the classroom either. I'll give you an update on him soon. He is still great at baseball - we've been going out to Stoddert pretty frequently this winter, it hasn't been too cold, and still singing and still beating me badly at chess.

There is a lot I haven't gotten you caught up on. Uncle Stinky Andrew bought an old jeep. No-one has seen it yet. Hannah is getting a companion for Kahsa (I am hoping she doesn't ever read this - if she does, "sorry" 'cause it's a surprise). Pictures and more details coming on those. And here's a big one. You cousins are going to Hogwarts. I don't know if I told you that Aunt Abby, Uncle Andy and Michael, Joshua, Rachel, Noah and I bet Bing are moving over to London England for a few months. Mom said that Michael, Rachel and Joshua are going to school somewhere in the English countryside. Sounds kinda cool. Details when I know more.

I love you and I miss you.

We went on vacation with Richard and Helaine last week. Here are some pictures. This is the 4th year in a row we have gone away with them around this time of year. The first trip was 5 years ago right after you died. Mom and I went by ourselves to a place called St. John. It was a really special 40th birthday present from all my friends. It gave Mom and me some time away to try and recover from your death. I was thinking back to that trip a lot on this go around.

Mom got hurt one day near the end of this trip. She got pushed by a wave into a coral reef. Then when she was trying to get unstuck, she stepped on a see urchin. A spine went through her toe. I have never seen Mom so physically hurt and scared before. It is hard to see people you love in pain. It is harder when you know there isn't a whole lot you can do for them. You will like this though - the way to make the sea urchin spine dissolve is to pee on it. How crazy is that. You can help someone feel better by peeing on them. It is the same thing if you get stung by a jellyfish.

I volunteered but Mom wasn't too psyched. Instead, we bought some vinegar and she soaked her toe. Helaine also did her best to try and remove what she could with a needle and a tweezer. That was as much excitement as I ever want on vacation. It was not good.

Otherwise, like everyone else, I got a lot of sleep and with that sleep came a lot of dreams. I need to go and see if I emailed myself notes about what I dreamt. I do that.

Joe and Jack had bad dreams the other night. Jack had a dream that Nana and Aunt Tracy had heart attacks. Joe dreamt that an elephant crushed a man and then Joe picked up the elephant. These dreams came a day after Joe said something sad in the car on the way to the bus in the morning. He said that he thought the little sister of one of his classmates had died. I said that I was pretty sure that wasn't the case but I would check. Thankfully Joe had misheard what his classmate had said. Jack told me he had his dream because of what Joe had said in the car.

As you can see, it is really beautiful where we went. We sat, read, watched the sunset and swam. That was it. Oh yeah, I do remember one dream I had. A big snake hit me hard in the shoulder with its head. It didn't bit me. It just smacked me hard. The day before I had the dream I ran over a snake on the road by accident. I thought it was just a branch. I felt pretty bad. I feel worse about hurting snakes ever since we started watching Jeff Corwin on Animal Planet.

Helaine sent this to me and Mom today. I sometimes worry that Jake, Ari and Simon might forget you. You guys were so close, but you also were so young. I worry that you might become an abstraction. I don't know how to explain that to you, but I want them to remember you, the boy. The way you talked, laughed, smelled, walked, slapped them in the butt, drank water from the water fountain. That kind of thing.

Jake wrote this for his English class. I know that I've told you how talented he is by making up song parodies. Clearly he doesn't just know how to be funny; he knows how to feel and how to talk about how he feels. Funny is hard, feelings harder.


HOPE FOR HENRY

I am him, the kid who never stopped smiling, the shining grin never escaping from his sick face.
I am what he loves, superheroes like batman, with a cape and a mask saving the world.
I am where he went, from the bone chilling weather of Minnesota, to his grandparents’ house on the eastern shore.
I am what he felt, love, support, assurance, and the motivation to never give up.

I am why he never gave up, because there was no reason not to try and all the reasons to try.
I am who loved him, his family, my family, my friend’s families, and the world.
I am who he impacted, changing my life and teaching me to never give up.
I am who thanks his for parents never leaving his side when he needed it most.

I am him, the kid who always made you smile, who could make you feel good after a long day.
I am him, the kid that couldn’t hate, couldn’t show anger because he didn’t want to.
I am him the kid who never lost hope even when things couldn’t get worse.
I am his memory, his love, his smile, his spirit, his flame that never died.
I am his hope.
I am Henry’s hope.

Jake Mintz 2008

When I looked at the clock this morning it said 3:31. I woke up because I wasn't liking my dream. At all. I found you. I was so excited to tell Mom. I found you in a tunnel under the ground. And at its end, the tunnel opened up to the light.

I read a story in the paper yesterday about funerals. It said that people should plan their funerals when they're alive to save their family from having to do it. It said some people build their own coffins. I wonder if this is why I had the dream.

In the dream I had on Friday night I was starting medical school. Wherever it was it looked like the 1950s - old, a lot of wood and kinda dark. I was excited and scared. I was scared because I am not very good at math.

We went to the cemetery two weekends ago. It was Grandma's yarzheit. I bought two bunches of flowers to put on your graves.

It was so windy -- there were 50 mph gusts -- that I had to put your flowers under a really big stone. I kinda buried them. I was the only one who dressed for the weather. Mom and Jack and Joe were pretty cold from the wind so we only stayed a few minutes and then jumped back in the car to warm up.

Jake, David Lane and Cousin Sam have all slept over recently.

When I was driving the babysitter home - we have these really nice students from Georgetown University, Carolyn and Jenny, who switch off watching the guys after school and babysitting - she said to me that David Lane is really nice and he is good with both Jack and Joe. Mom and I have noticed the same thing. He gets along and plays with your brothers both really nicely. That is how Mom and I think you would have been.

Chuck has a book coming out. Rich is having a book party when we get home. Very excited for him. I am looking forward to reading it. The book is called The Day Freedom Died.



Last weekend we went to a performance at Strathmore which Shelly and Mike wrote. It was about the first ever African American opera company. We just went out with them to Cactus about a week before that. Nick and Jeffrey have grown up into really terrific guys.

Joe plays chess. Remember how you and Jake played online. Joe, as usual with him, wants to play from the second he gets up right up until the moment he closes his eyes to fall asleep. Mom indulges him. Me, I don't have Mom's patience, so when I don't feel like playing I set him up on my laptop so he can play against the computer. I started out on the "easy" setting and he quickly moved to "hard." I think he is pretty good.

Joe refuses to take any kind of lessons, swimming, riding a bike or skating (I am writing this at an iceskating party for a friend of Joe's, Gigi. Mom says he needs lessons but he doesn't want any. He does want to take guitar lessons. Jack taught him Smoke on the Water. I wonder if you had musical talent. I don't have any; Mom does. Maybe you got that from Mom.

Last weekend was a bowling party for Allison's birthday. Remember Allison. She's Joe's "girlfriend."

Paula, Andy, Emily, Sam, Jacob and Joey came over for Shabbat dinner on Friday. Andy played our piano and it was awesome. Emily and I sat and read while listening to him. The boys all played video games and Mom and Paula chatted.

Ken and Suzie and Eli, Evie and Samara came to stay with us a couple of days last week. The last time we saw them was when we were up in New York in November and everyone was pretty sick. They stayed at our house and went to see the monuments and the museums. One night we went to Cactus for dinner. Eli played chess with Joe. I think they all had a good time.

I read something the other day about a song. In it the songwriter says he needs to remember not to start a sentence with "remember." I had a girlfriend who, after we broke up, once said to me, "don't reminisce." I don't understand that. I do remember exactly where we were when she said that. We were in my car driving up Wisconsin Avenue around Tenleytown. I believe she was saying that I shouldn't romanticize the past. I think she meant we were over, so it wasn't worth talking about. But that isn't me. I am always thinking about the past. But thinking about the past and not living in the past are different things.

On Tuesday we are going away with Richard and Helaine. Nana is going to come over and stay with your brothers. It is our 4th year doing this. I like traditions. Having done this for so many years, we now know exactly how long we can go away before we go crazy missing your brothers.

Jen Klein told Mom she went to a funeral of a kid named Henry. His little brother is Jack. Pretty sad.

Remember I told you that Joe likes a girl. Here she is. Her name is Allison.

This is too funny. I am sorry I haven't written. I have been trying to finish something at work. I'll post an update.

Love you.


Child Bankrupts Make-A-Wish Foundation With Wish For Unlimited Wishes

February 3, 2008

Carlson: 7-year-old survivor faces death without bone marrow donor

BY JOHN CARLSON
REGISTER COLUMNIST

The back door slammed, and perky, smiling Maddie Landwehr, home from school, ran straight into the living room and hugged her dad.

The 7-year-old girl gobbled down three chocolate chip mini-muffins, did a cartwheel and told her parents, again, that she wants to go to Disneyland.

Amazing, given what this child has gone through, what she endures every day, and what she faces.

"Maddie has had nine surgeries," said her dad, Ernie Landwehr.

"No," said Maddie. "Ten."

They counted. She was right. But that's only part of this child's story.

Maddie was 2 years old when she was adopted by Ernie and Nancy Landwehr of Altoona. It's when orphanage workers in India told them of the horror of how the girl's life began.

Born to an unwed, teenage mother, Maddie - whose full name is Madison Aditi Landwehr - literally was "thrown away" moments after her birth and left to die in a remote area of central India. Lying in the open, she was mauled by wild dogs. Her right buttock was devoured, as was her hip. That destroyed a growth plate, which allows a child's leg to grow properly.

She was near death when she was found and carried to a hospital, where doctors saved her life. She weighed only 4 pounds.

Four months later, she was taken to an orphanage in western India, and that's where she stayed for a year and a half until the Landwehrs brought her home to Iowa.

"It was terrible, unimaginable, but I guess that's obvious to anybody who hears the story," said Ernie, a college admissions official.

"I just know that when we saw her picture and then when we saw her with our own eyes, we knew that this is our little girl."

Which should be the beginning of a happy story. And, through all those surgeries to fix her leg and help her walk, a story that should bring a happy ending.

Not yet. Maybe not at all.

Ernie and Nancy learned last year that their happy, beautiful little girl has an inherited, rare blood disease called Fanconi anemia.

It prevents her red and white blood cells and platelets from reproducing as they should. People with the disease are likely to develop serious infections and cancer-related illnesses, particularly leukemia.

That means Maddie needs a bone marrow transplant to have a chance to survive. So far, no suitable donor has been found.

"We're told that any suitable donor will almost certainly have to be of Indian descent," said Nancy, a stay-at-home mom who with Ernie has three grown biological children. "There are a lot of people of Indian descent in Iowa and around the country, and we're trying to get the word out and encourage people to be tested."

Any healthy person between the ages of 18 and 60 is eligible for testing. Their blood cells are examined after a quick, painless swab of the cheek. Information from the swab is entered into a database, and a computer analysis determines if a person is a suitable donor.

The 2000 census, the most recent count of Iowans with a reliable breakdown by age and race, found 3,751 Asian Indians between ages 18 and 60 living in Iowa. It's likely that number is higher today.

The donor can come from anywhere - there are 6 million names on the worldwide bone marrow donor registry. Ernie and Nancy are certain that somebody, somewhere, can save their girl's life. It's just a matter of finding the person.

The thing is, while Maddie seems healthy - spend time with her and you'd never know she was sick - she can't wait long.

"She is very sick, and she definitely needs this bone marrow transplant," said Dr. Deborah Smith-Wright, a Des Moines native and a pediatrician at the Shriners Hospital for Children in Minneapolis, who has been caring for Maddie since 2005. "Spontaneous remissions are extremely rare in Fanconi anemia patients."

Smith-Wright said there are only about 1,000 cases of Fanconi anemia worldwide.

"Maddie has been through so much," Smith-Wright said. "The injuries, the infections, the treatments and now this. It's been a rough time for her, but she's a brave girl. She's a real favorite around this hospital."

Her first surgery was 3½ years ago and was an initial step in repairing her hip and lengthening her right leg, which was not growing as it should.

"The doctors in India did their best, I'm sure," Ernie said, "but doctors here told us she looked like she'd been sewn up in a hurry by a vet."

She was in a body cast for eight weeks after the first surgery in Minneapolis - the first of three such casts.

But her blood tests indicated a probable infection. Her white blood cell and platelet counts were at a critically low level.

"She wore a thick-soled shoe on her right foot to even out her legs," Nancy said. "It was so she could walk reasonably normally. She hated it. It was like wearing a brick."

The first leg-lengthening surgery was last March at the Shriners' hospital. The leg was attached to a crank-like device, which had to be turned four times a day for 45 days.

"Maddie is the one who turned the crank," Ernie said. "Her leg grew a little over 4 centimeters."

Other than a short time in a wheelchair, she never stopped walking. There were more infections, more drugs, more surgeries and injections, including the strong antibiotics she is given through a port in her chest three times a day.

"The Fanconi anemia, we never imagined such a thing was possible after all she'd gone through," said Ernie.

"She was sitting here one night, and all of a sudden her nose started bleeding. I put a towel over it. It wasn't long before the towel was soaked with blood. We had to call an ambulance. I couldn't believe she could have that much blood in her little body."

The infections, the bleeding and sporadic blood counts led to the tests that confirmed Fanconi anemia.

The orthopedic treatments have been done at the Shriners' hospital at no cost to the Landwehr family. The bone marrow transplant would be done at University of Minnesota Hospitals.

"My daddy tells me I have special blood," Maddie said, listening as her parents describe her illness and treatments. "He says I have angel's blood."

Friends have created a Web site, "helpmaddie.com," which tells her story and gives information on how to donate money to the family to help with travel expenses. The Web site also lists fundraising events to help the family, such as a Feb. 23 pancake breakfast in Maddie's honor at Clay Elementary School in Altoona, where she is a second-grader.

Maddie is small for her age - she weighs 30 pounds - and wears three little silver rings on her tiny fingers.

"I love jewelry," she said, giggling.

She wants to meet Faith Hill. She wants to ride a bike. She loves school, and her favorite things at Clay Elementary are, in order, recess, science and math.

When she grows up, she wants to become a doctor.

"I want to help sick people," she said.

But all of that depends upon finding a donor.

"It's not critical today," said Nancy. "She's getting along fine - today. Next week, it could become critical. Or next month. We just don't know."

"It's not a matter of if this kicks in," said Ernie. "It's a matter of when."

They have talked to some of the best doctors in the world and have done their own research. They know that Maddie could be expected to live only to the age of 12 without the bone marrow transplant. With it, she might well live into her 20s or 30s or longer. And by then, with ongoing research, who knows?

"What we are certain of is that she needs the transplant to save her life," Nancy said.

"It would be wonderful if everyone got themselves tested. The chances are you can save a life. If you're of Indian descent, for Maddie's sake, we ask that you please be screened as a potential donor."

Maddie understands - at least as much as a 7-year-old can comprehend such a thing - and she's ready to deal with whatever comes next.

"Somebody will help me," she said.

It would, everybody in this family knows, be the ultimate gift.

But Ernie said the greatest giver of all has been Maddie.

"I can't measure what she has done for us," said her dad. "I can't imagine what our lives would be like without her. She is the joy of our lives. She has courage and great humor and a spirit unlike any I've ever seen."

With the help of somebody they have never met - possibly somebody they never will meet - she will be in their family for a long time.

Columnist John Carlson can be reached at (515) 284-8204 or jcarlson@dmreg.com

Joe is student of the week in his class this week. For his classroom, Joe, with Mom's help, prepared a poster filled with photos of the family and things important to him.

Today, Jack and Mom and I went to Joe's class to share in student of the week activities. We sat with the class and they asked Joe questions to learn more about him.



They asked him his favorite food, color, travel spot and movie. Someone asked Joe how many siblings he had, and your brother pointed to Jack, and that was that.

That made me pretty sad. It is understandable. You aren't on his radar, but it still can make me sad.

And then Joe was asked to point out his favorite pictures on the poster. He pointed to one of him playing baseball and to the one next to it, which was one of two photos with you.

"Yeah!" I thought.

When asked why those were his favorites, he explained that he loves playing baseball and he loves real baseball players. He was referring to Cal Ripken, who was sitting beside you.

That broke my heart a bit. Okay, a lot.

Then we went to the gym to play "Freeze Tag" which is what Joe chose as his special student of the week activity. Of course we passed by your plaque on the way there.

In my heart I kept wanting to shout, "Hey Joe, tell them about Henry, your brother Henry. You know, your older brother who loved you and who also had Mrs. Berliant as his teacher. He loved baseball just like you." But all that was something best to keep inside.

Jack didn't say anything. Mom didn't say anything. I didn't say anything. And that was right. It was fine. What mattered was Joe and his classmates had a great time.

The Fanconi anemia Research Fund won $50K!



I am really proud of the families. They banded together and got it done. I love the progression of posts to the discussion group.

Last night on my way home from work I was thinking about the whole winning the lottery thing. I remembered something that I have wanted to do since you died. I want to put your name everywhere. Big places and small. Places where you used to go. The Henry Strongin Goldberg family break room at Georgetown Hospital, the Henry Strongin Goldberg Jewish Primary Day School Athletic Center, the Henry Strongin Goldberg Recreation Center at Stoddert Elementary (they're building a whole new big rec center at Stoddert) - that sort of thing. I'd buy a bench at Guy Mason and put your name on plaques and bricks. I just want people to forever say, "Who is that Henry Strongin Goldberg," and learn more about you. That is why I am excited for Henry's Garden at JPDS. They are having the first-ever student dance and they'll raise money there for the garden.

Check this out. Not sure what happens with this. We actually trademarked the name. Couldn't it have been Hope for Harold, Hope for Howard, Hope for Hank.

Weird.

Joe is in love. With a girl. To give you a sense of how crazy this is, he may like her even more than he likes baseball.

Mom is totally excited and enthusiast. I am totally cautious. We just aren't used to this.

You, of course, declared your love for Bella early and were unwavering. You loved her and told her and told us and that was it. You were a romantic and very open about your feelings.

And then you died and we got used to Jack who is so private that we'll probably learn about his getting married years after the fact. He does share some stuff with Mom, but never anything about liking anyone.

Like Jack, Joe has never said anything about liking girls. Now, all-of-a-sudden it seems, he is all about this girl - this girl at school named Allison. He even called her on the phone! Can you believe it. And she likes him back the same way -- probably the toughest thing in life ever to get right.

This is serious. Mom has been bumped from atop the list of who Joe plans to marry.

We are going over to Allison's house for Shabbat dinner. I will report back.