I have a Mother's Day letter that I haven't put on here. It was a weird morning because I looked at Mom and asked her if she was feeling alright. And she looked at me and said she was wondering the same thing about me.

I have been thinking about Grandma a lot. I think it might be partly because Papa Teddy is getting married. I miss her.

Here is a card that Jack made for Mom and let me tell you it made her day complete. She said it was the nicest thing anyone could ever say. I think Jack has a future at Hallmark Greeting Cards.

Mom, nobody's perfect but to me you are.



Joe made these for Mom. He is very into making hearts.





And here are cards you made for Mom years ago.







My Mother's Day present for Mom was to take us all to the Nationals game. I figured having all of her boys happy and smiling with her out in the fresh air was a good gift.





When we got back we had a big Mother's Day barbeque in our backyard for all the Strongins, Cherners and Goldbergs. Here are your cousins on the back steps.





It was a nice day.

I just cried for the third time in four days today. I am glad we are going on vacation next week.

On Sunday, we went to Papa Teddy's and that was hard. Then it got even harder as we watched ESPN and they had a segment on a boy whose Make A Wish wish was to be a coach for the day with the Philadelphia Eagles. I had to walk away. I couldn't take it.

Then yesterday, Mommy and Debbie Blum and I went to Children's Hospital in Philadelphia and together with these really nice people from a place called Jacobs Music gave a totally cool piano to the clinic there.

Two of the guys from Jacobs music are brothers who are about to lose their other brother to cancer. That is part of the reason they are helping Hope for Henry Foundation. He is supposed to die any day now.







There was a boy in the music therapy room who was you. I watched him walk unsteadily into the room holding his mom's hand, and saw you walking down the hall in the clinic in Minnesota for the neurologist who wanted to check the neuropathy you had from the steroids and GVH. Or maybe it was after your brain surgery. I can't remember which.

I couldn't take my eyes off this kid. Unfortunately, he was you when you were not in a good mood. And I know that a lot of that bad mood is because of all of the steroids.

His name was Matthew. There were too many people in the room and just too much activity. He seemed okay before we all crowded in. But with all of the commotion he just kept his chin against his chest and stared downward.

It reminded me of when Superman came to visit you in your room at Hackensack. You wanted nothing to do with him. I felt bad on so many levels.





That head of hair definitely looked familiar.



Everyone was very happy about the piano, but I just wanted to take Matthew away from that room and hug him. Luckily, he got off the piano bench after a while and just buried himself against his mom and then he walked off with his dad.

Which takes me to 5 minutes ago when I watched this video about another Matthew. I know Matthew's parents and they are really, really good people. Going through this once is enough. I cannot even imagine. It is interesting to see Dr. MacMillan. I wonder if she is still running. I remember that she runs marathons.

The shot of the Mississippi is right where Jack and I went down and skipped stones. Joe and I did that on Saturday at Seneca Creek Park after we dropped Jack off at Shadowlands.





Matthew Pearl Prepares For Bone Marrow Transplant; Teammates In Eureka Show Their Support

Minneapolis, Minnesota, where the calm of the water is overshadowed by sleepless hours for a St. Louis County family.

The University Of Minnesota Hospital-Fairview is a leader in the fight against Fanconi Anemia, a rare and vicious blood disorder that has left 9 year old Matthew Pearl fighting for his life.

His mother Diane said, "The medicine is like drinking Drano. It kills all the cells, and the cells are so sensitive at your mouth and bottom areas. That's the first place you start getting sore."

To prepare for transplant, Matthew is receiving transfusions which eliminate his immune system. "What's difficult about Fanconi Anemia is they don't repair their DNA well. So if you give them chemotherapy or radiation they can get really sick," according to Dr. Margaret MacMillan of the marrow transplant program in Minnesota. "In general, you give them a fifth of what you give a normal patient."

The side effects are excruciating. The pain is so unbearable at times that not even a mother's touch can make it go away.

This is the second time the Pearl family has undergone this kind of suffering. Daughter Alex underwent a bone marrow transplant for the same disorder five years ago. Her mother said, "Unfortunately, it gets worse before it gets better."

Matthew's father, Mark, is also at his bedside. Fighting back tears, Mark said, "When he's resting comfortably we've had some tremendous father-son time.

While the Pearl family prepares for Friday's bone marrow transplant, Matthew's friends are doing their part to show how much they care about him.

At home in Eureka, Matthew's baseball team skipped practice on Wednesday. Instead, they spent the evening shaving their heads in his honor.

Matthew will likely lose his hair due to chemotherapy and radiation. His teammates figured he shouldn't be bald alone. Of course, that didn't make going under the blade any easier.

Ford Viehman says, "I've been growing it out all summer and now I've got to get rid of it." Eli Schmidt says, "I just got this mohawk about a week ago, and I really don't want to lose it."

But they're prepared to make the necessary sacrifice, in honor of their good friend. Collin Fischer says, "He's like a brother to me. A brother from another mother."

The kids' coach couldn't be more proud. In fact, he thought it was such a good idea, he got his head shaved, too. He says, " We didn't push the kids and say this would be a neat thing to do. The kids said hey we want to do this for Matt."

The haircuts and the hysterics were all caught on tape. The team will mail it overnight to Matthew. They can't wait to hear his reaction. Collin Fischer says, "He's probably not going to say anything. He's just gonig to laugh his head off."

But more than anything, his newly bald teammates want to make sure Matthew gets their message. Fischer says, "That we're all with him and good luck."

His friends know Matthew has a difficult road ahead. They hope their support and their gesture will make him smile in the coming months.

I wonder why Fanconi patients are often really good athletes. I told you about the boy who was in the Punt, Pass and Kick competition at RFK. I know that the Frohnmayers kids are all great athletes. And there was you.



Bradenton brothers with rare blood disorder await 'miracle'

DONNA WRIGHT
Herald Staff Writer

BRADENTON - To look at Anthony Negrin, one would never suspect the 16-year-old Bradenton boy with the muscle tone and grace of a born athlete is fighting for his life.



Roxanne Negrin and her son, Anthony, 16, are surrounded by information about Anthony's illness on the table in front of them, and family photos on the wall behind them. Anthony has a rare disease which requires a bone marrow transplant.

But his bone marrow can no longer make red blood cells.

Negrin has Fanconi anemia - a blood disorder so rare that only 10 to 20 children each year in the United States are diagnosed with the genetic mutation.

Until recently, Negrin had no problems, but then, for reasons his doctors cannot explain, his bone marrow stopped producing the cells vital to distributing oxygen throughout his body.

If it weren't for regular transfusions, Negrin's red blood count would drop so dangerously low that his life would be threatened.

Now, Negrin's future hangs on finding a bone marrow donor. An international search is under way to find the perfect match.

That match, says Negrin's mother, Roxanne, must have at least seven and preferably eight of the same 10 genes as Anthony has in his blood.

The Negrins thought their prayers were answered when preliminary tests showed that Anthony's younger brother, Jonathan, was a perfect 10 to 10 match - an almost unheard-of possibility.

But their hopes were dashed when subsequent tests to prepare for the transplant procedure revealed that Jonathan also has Fanconi anemia, or FA.

So far, Jonathan's bone marrow is producing red blood cells, his mother said. But doctors have told the family that Jonathan's red blood cells could dramatically drop - and they can't predict why or when.

Then Jonathan, too, would need a bone marrow transplant.

Inherited disorder

Life for the Negrins has been turned upside down since learning two of their four sons have FA.

But their optimism has not wavered, sustained by a deep faith and the support of their friends and the boys' teachers at Bradenton Christian School, who help the family navigate the mind-numbing complexities of dealing with their sons' serious medical conditions.

The Negrins' story really begins years ago when Roxanne walked into a tiny Cuban restaurant in Miami with her mother. Roxanne took one look at the handsome man in the tiny kitchen window and grabbed her mother's arm.

"That's the man I am going to marry," Roxanne said. "He doesn't know it yet, but we are going to get married."

Six months later, Sergio and Roxanne Negrin tied the knot. It would have been sooner, Roxanne said, but they had to wait on an open date for a church wedding.

Little did the happy couple know that their union would join more than love.

FA is an inherited disorder. For it to be passed from one generation to the next, both parents must carry a mutated FA gene. Even when that rare genetic combination occurs, the couple's children have just a 1-in-4 chance of developing the disease.

"What are the odds," Roxanne asked, "that I would pick a guy who had the same defective gene as me?"

Refusing to be pessimistic about their fate, Sergio jokes that what united them was the Fanconi Anemia Attraction.

United in their struggle, the sobering diagnosis has strengthened the family even more.

The Negrins feel blessed to have discovered the problem in time to do something about it.

Unlike most children afflicted with FA, brothers Anthony and Jonathan have been very healthy their entire lives and are still free of symptoms. Avid athletes, they master every sport they try, their mother said.

Typically, FA shows up in early childhood. Many patients develop acute myelogenous leukemia, according to the Fanconi Anemia Research Fund.

Anthony is not troubled by his FA diagnosis. Instead, he sees it as a sign, almost a mission.

"I feel I have been blessed," he said. "I think I have this disorder so I can bring people to Christ. I have already brought others to Christ because there are people praying for me who have never been to church before."

"We are waiting for a miracle," his mother said. "We know a miracle will come."

The signs may have already occurred, beginning with the events that led up to Anthony's diagnosis.

Fate intervenes

Last month, Anthony tried out for the tennis team at BCS. While signing up, Dawn Cotrone, the mother of one of Anthony's friends, pulled him aside. Cotrone had been taking care of her sister who had been diagnosed with a rare form of anemia. She knew how to spot the subtle signs.

Even though Anthony looked perfectly healthy, Cotrone noticed a certain cast to his skin that she thought should be checked out by a doctor.

"I blew off her concern," said Roxanne, who shares the same olive skin tone as her son.

But then one day Anthony and his friends stopped by South Philly Cheese Steak restaurant on 34th Street West. Anthony had no more than walked through the door, when a stranger walked up to him.

"Excuse me," the woman said. "But you need to tell your mother to take you to the doctor. You are anemic."

At first, the family laughed about the coincidence. But today the Negrins would love to find that woman to thank her for spurring them to action.

The Negrins called pediatrician Dr. Frank Davis, who had taken care of their boys for years.

The warnings from Cotrone and the stranger proved correct when blood test results showed that Anthony's red blood count had dropped to 4.1, his mother said. A normal reading should be around 14.

"Dr. Davis could not believe it at first," Roxanne said. He couldn't believe Anthony's count could be so low without the telltale signs - throwing up, fainting, nausea and dizziness.

But although Anthony seemed fine, his doctor knew he wasn't. He ordered the Negrins to take their son immediately to All Children's Hospital in St. Petersburg.

There, all of the tests for the most likely problems - including leukemia and aplastic anemia - came back negative, Roxanne said.

As a last resort, the All Children's team considered FA, even though Anthony showed no symptoms.

But there was one final clue to be investigated - children born with defective FA genes are often born with double thumbs on one or both hands.

At birth, Anthony's right hand had a double thumb, a tiny protuberance that was removed while he was an infant.

Absent other symptoms, the doctor who delivered him never suspected the double thumb could indicate a serious medical condition, Roxanne said.

The news that Anthony had FA stunned the Negrins. Friends from BCS - Evelyn Magley, Lisa Judge and Judy Barber - flew into action, culling the Internet for information on FA and finding resources to help the family deal with the challenges ahead.

Magley called an FA hotline and got the names of the three specialists in the United States who know how to treat the disease.

The Negrins left messages with all three, even though it was Memorial Day weekend.

Dr. Richard E. Harris of Cincinnati Children's Hospital returned the call immediately, even though he was on a scouting trip with his son.

Within 24 hours, the Negrins had an information packet sent by overnight courier to Bradenton and an appointment with Harris, who began blood tests to see if one of the family members could be a donor match for Anthony.

When the match with Jonathan was found, Roxanne, Sergio, Anthony and Jonathan flew to Cincinnati for more than four days of preliminary tests and procedures.

Now that his brother Jonathan has also been diagnosed with the disorder, those preparations must be done again once a new donor is found.

Then a another trip north will be necessary for the bone marrow transplant, which will require the Negrins to stay in Cincinnati for three months during the recovery period.

The challenges don't end with a successful bone marrow transplant.

Anthony faces several months of recovery once he returns home. His parents face the challenge of making their house as antiseptically clean as possible to ward off any exposure that could prove disastrous for Anthony, whose immune system will be compromised.

But through it all, Roxanne has not given up hope. Her husband, Sergio, she said, is the family's anchor. Her son, Anthony, the optimist who helps her cope.

"My Anthony charges me up like a little wind-up doll," she said. "Whenever I get down, he tells me, 'Come on Mom, God already knows who that donor is.'"

Donna Wright, health and social services reporter, can be reached at 745-7049 or at dwright@HeraldToday.com.

Bone marrow donation

To register to become a donor, contact the National Bone Marrow Donation Program at (800) 627-7692.

What is Fanconi anemia?

Fanconi anemia is one of the inherited anemias that leads to bone marrow failure (aplastic anemia). It is a recessive disorder, meaning if both parents carry a defect (mutation) in the same FA gene, each of their children has a 25 percent chance of inheriting the defective gene. When this happens, the child will have FA.

Extremely rare, FA is diagnosed in only 10 to 20 children in the United States each year.

FA occurs equally in males and females. It is found in all ethnic groups. Though considered primarily a blood disease, it can affect all systems of the body. Many patients eventually develop acute myelogenous leukemia at a very early age. FA patients are extremely likely to develop head and neck, gynecological and/or gastrointestinal squamous cell carcinomas, again at a much earlier age than in squamous cell carcinoma patients in the general population.

Patients who have had a successful bone marrow transplant and, thus, are cured of the blood problem associated with FA, still must have regular examinations to watch for signs of cancer.

--------------------------------------------------------------------------------

© 2006 Bradenton Herald and wire service sources. All Rights Reserved.
http://www.centredaily.com

Who's Your Papi?
What drives David Ortiz, the supersized Red Sox slugger, is his resentment of the ball club that did him wrong ... and the fighting spirit of his late mother, Angela Rosa

By Tom Verducci

Every ballpark seems smaller, every room brighter, every worry lighter when you're in the company of David Americo Ortiz, the friendly galoot of a designated hitter for the eternally grateful Boston Red Sox. In girth and mirth Ortiz evokes Babe Ruth, Santa Claus and your favorite stuffed animal from childhood. The only son of Enrique and Angela Rosa Ortiz -- "I'm my mom's baby boy, you know?" he says proudly -- grew up loved in Santo Domingo, D.R., and seems intent on loving the world back.

Runyon or Twain might have invented a character like Ortiz, if it were possible for even such expansive imaginations to conjure a 230-pound teddy bear who speaks like a California surfer with a thick Spanish accent; a Dominican who married a Wisconsin girl and has wintered part time in the state; a hip-hop, bling-covered fashion plate who underneath his cool threads wears black boxer shorts with who's your daddy? printed in all directions in Day-Glo colors; and -- most amazing of all -- one of the game's great sluggers, who, at 27, was released by the Minnesota Twins after no other major league club wanted him in a trade.

Ortiz, now 30, ranked fourth in the American League in home runs (18) and first in RBIs (56) at week's end, a pace that would leave him with 48 homers and 149 RBIs for the season and a three-year run in which he had no fewer than 41 homers and 139 RBIs. Only two players in history maintained such high production for three consecutive seasons: Ken Griffey Jr. (1996 through '98) and Ruth, who did so for six straight years (1926 through '31). A .300 hitter last season, Ortiz was batting .265, blaming the drop partly on the extreme defensive shifts employed against him.

In Ortiz there is a little bit of something for everyone to like, which helps explain why he received more All-Star votes from major league fans than any other player last year; why his Boston Red Sox teammates, in one of the more respectful acts in clubhouse culture, ceded him total control of the stereo; and why a terminally ill eight-year-old boy, given days to live, asked to visit Fenway Park to meet him in April. Ortiz's popularity, like his gap-toothed, omnipresent smile, crosses cultures and generations.

"He appeals to every demographic," Red Sox general manager Theo Epstein says. "People love watching athletes who you can tell enjoy what they're doing. And to have a guy who comes to work every day with a smile -- that's especially huge in our clubhouse, where we had problems in the past."

Says Puerto Rican-born teammate Alex Cora, "People love to be around David. The unique thing about him is that he communicates just as easily with the American players as with the Latin players. Most of the Latin stars don't have that quality. He brings the team together."

Ortiz thrives on such interaction, preferring to spend as much time as possible around friends and family. Yes, he is outgoing by nature, but the company also keeps him from the dark thoughts that plague him sometimes when he is alone. Behind the smile there is pain. "I start thinking about life after death," Ortiz says. "I've got to quit thinking about it because it's very deep. Very deep. Sometimes you start thinking about it, and you don't feel like you want to be alive, so I don't like to get all quiet.

"Everybody goes through some tough times in their life, no matter what you do. Man, I've had my tough times."

Eight minutes. Ortiz remembers it as exactly eight minutes. It is all the time needed for an elite runner to cover two miles, for an orchestra to play the second movement of Brahms's Symphony No. 1 or, as Ortiz found out, for your heart to break. On New Year's Day 2002, it was eight minutes from that awful phone call from his sister's boyfriend -- Your mom has been in an accident -- to the time Ortiz arrived at the roadside wreck near his home in Santo Domingo. A dump truck. His mom's car. And Angela Rosa ... gone.

"I was there eight minutes after it happened, and she was dead already," Ortiz says. "That's why I don't worry about baseball. I don't feel like I put any pressure on myself when I'm playing baseball. Not after that."

Ortiz was 26 years old at the time and still trying to establish himself as an every-day player with the Twins, who had plucked him from the Seattle Mariners' farm system in 1996, in one of those pennant-race deadline deals in which the anxious Mariners wanted veteran third baseman Dave Hollins. At the end of the '97 season Ortiz was promoted to the big leagues, and the first person he called was, of course, Angela Rosa. She and Enrique, whom everyone calls Leo, were always there for him. There was the day Leo, who sold auto parts, left work to watch his boy play Little League for the first time. David smacked a home run, and as he rounded third, Leo bolted from the stands and interrupted his son's trot to home by throwing a big hug around him. Though David still visits Leo regularly in Santo Domingo, things will never be the same without Angela Rose.

"She was one of the best mothers ever," Ortiz says. "She was pretty much my everything. It's tough, man. I come from a poor family, but I had a good education and a good home. That counts for everything. My mom, she wasn't like a baseball mother who knew everything about the game. She just wanted me to be happy with what I was doing."

Both his parents, Ortiz says, stressed the importance of education, but it was Leo, a former semi-pro ballplayer, who advised David to give up his other love, basketball, to concentrate on baseball. It was baseball that brought Ortiz to Wisconsin in 1996, where, while playing Class A ball at age 20, he met his wife, Tiffany, and started a family that includes two daughters, Jessica, 9, and Alexandra, 5, and a son, D'Angelo, 1 1/2.

The year that began with his mother's death, 2002, would also be Ortiz's last with the Twins. He hit .272 with 20 home runs and 75 RBIs platooning at first base for a young team that reached the AL Championship Series. Minnesota, though, was not high on Ortiz, who seemed injury-prone (he missed chunks of time with wrist and knee injuries), was not a polished fielder and couldn't catch up with good fastballs on his hands. Minnesota G.M. Terry Ryan figured that Ortiz's development had stalled and decided to trade him. "He just wasn't getting it done here, for whatever reason," Ryan says. Then he admits, "I made a bad baseball decision."

He wasn't alone. Ryan tried to trade Ortiz for two months. "Not one team made an offer," Ryan says. "Nothing."

Finally, in December 2002, the Twins released Ortiz. Finding a job at that point of the off-season looked so difficult to him that he told his agents, Fernando Cuza and Diego Benz, to check for openings in Japan and Mexico. "[The Twins] did me that bad," Ortiz says. "I never had a problem with anybody in that organization. Ever, bro. I was a good teammate. I respect everybody. I never had no argument with no coach, nobody. I never did anything wrong, but they did me wrong. No respect, bro. I was lucky I got a job with the Red Sox. There were other teams, but they were offering me way less money."

The Red Sox gave him $1.25 million and figured he was one of five guys -- along with Jeremy Giambi, Shea Hillenbrand, Kevin Millar and Bill Mueller -- who would combine to fill three spots (first, third and DH). Six weeks into the season Ortiz showed so little power (two homers) that his teammates were calling him Juan Pierre (the light-hitting leadoff man who's now with the Chicago Cubs). Ortiz wanted out of Boston. "I called my agents," he recalls, "and said, 'If you guys are not here tomorrow, you guys are fired.'"

After the next day's game Ortiz and his agents met with Epstein in the players' parking lot outside Fenway Park. "I told Theo, 'I want you to trade me or release me,'" Ortiz says. "'I can't be sitting here watching this circus anymore, guys I know I can do better than. Me just watching from the bench? I'm not that kind of guy. I don't clap for something that doesn't deserve it.'"

"Give me a couple of days," Epstein recalls saying. "I promise you we've got something in the works to free up a spot for you."

On May 29, 2003, Epstein traded Hillenbrand to the Arizona Diamondbacks for righthander Byung-Hyun Kim, a forgettable trade for Boston except for the opportunity it gave Ortiz. Finally, he could smile.

Ortiz had felt stifled in Minnesota, an organization that so emphasizes situational hitting that no Twin has hit 30 home runs in a season since 1987. The 6'4" Ortiz was the square peg who didn't fit in the round hole. "They wanted me to stay inside the ball," Ortiz says, referring to a style in which a lefthanded hitter tries to hit inside pitches to leftfield. "They were teaching that to everyone. That's why nobody ever hits home runs there. But when you're young in the big leagues and the coach tells you to do something and you don't do it and you get negative results, then you're f-----. They're going to sit you down."

The Twins, Ortiz says, so enthusiastically stressed small-ball tactics such as hitting behind runners that "if you moved the runner over from second base [with a groundout], you got high fives in the dugout like you just hit a home run."

In his first at bat with the Red Sox, while batting cleanup in a spring training game, Ortiz happened to come up with a runner on second base and no outs. "I came in with that little pull, cheap-shot s---," said Ortiz, explaining his grounder to second base on an outside sinker. "I still had the Minnesota Twins in my system."

This time there were no high fives waiting for him in the dugout, just manager Grady Little with a word of advice. "Hey," Little said. "Next time? Bring him in."

Ortiz smiles at the memory. "I was like, O.K.!" he says. "I had a little more freedom than what I was used to."

Says Epstein, "We didn't know what we were getting. Nobody knew. We just let him be exactly what he is."

Ortiz, with a mechanical tune-up from hitting coach Ron Jackson, and freed of the wear and tear of playing in the field, started turning on inside pitches and closing that hole in his swing on inside fastballs. From June 1, 2003, through June 1, 2006, he slammed 132 home runs, second only to Albert Pujols's 140 in the majors. He finished fifth, fourth and second in AL MVP balloting in the past three seasons while conjuring up so much late-inning magic -- he has 13 walk-off hits with the Red Sox, including three in Boston's 2004 postseason run to a world championship -- that last year the team presented him with a plaque declaring him the greatest clutch hitter in the history of the boston red sox. Ortiz lived up to that billing on Sunday, hitting a three-run walkoff homer at Fenway to beat the Texas Rangers 5-4.

"He loves coming up in the big spot," says Epstein, whom Ortiz has persuaded to junk the sabermetrics principle that clutch hitting is not a skill. "He makes you rethink the objective analysis. The way he rises to the occasion and the quality of his at bats, the numbers don't reflect that human element."

Says Ortiz, "It's mostly confidence. If you go up there thinking you might not get it done, you're out already. I know I'm going to hit you. And I have confidence all around me here. In Minnesota, if we faced a good pitcher, guys would say, 'Oh, well, I'll get my hits tomorrow.' Here? We don't care who's pitching."

Ortiz is an icon in Boston already. "A larger-than-life figure," says second baseman Mark Loretta of the man called Big Papi. (Ortiz, forgetful of names, has a habit of calling people Papi, a Spanish colloquialism for daddy or pop. His frequent use of the word was turned around on him long enough ago that he can't remember when it began.)

Ortiz's transformation from released player to, as Toronto Blue Jays G.M. J.P. Ricciardi says, "a Hall of Famer with five more years like this" may be unprecedented. The Brooklyn Dodgers lost Roberto Clemente to the Pittsburgh Pirates in the mid-1950s version of the Rule 5 draft, but no other hitter this good has ever been willingly cut loose.

The Red Sox this spring signed the former castoff to a four-year, $52 million extension, keeping him in Boston through 2010. It's just another reason why Big Papi is smiling. "I'm not going to lie, I got frustrated a lot before [Boston]," Ortiz says. "It's been tough. The worst was losing my mom. Losing her was something I couldn't figure out at the time. I was, like, lost and confused.

"When things weren't going good, she would always say, 'Son, you're always going to be my baby boy. Keep fighting. I love you.' Now, even though I don't have that voice, I feel that spirit to fight back when times are tough. My mom, she's still always there for me. Always."

Issue date: June 19, 2006

Copyright © 2006 CNN/Sports Illustrated

We went with Papa Teddy and Jeri to go see the Nationals play the Yankees. I am sure that Papa Teddy, growing up watching the Brooklyn Dodgers, is no fan of the Yankees.

Jack and Joe were very excited about seeing Alex Rodriguez, Johnny Damon and Derek Jeter.





It was about 100 degrees out and no breeze. A lot of that is Joe's sweat and a little of it is water that we were pouring over his head to keep him cool. It was hard for everyone but me. I didn't mind the sun. I was just very psyched just to have everyone together and be at a ballgame for Father's Day.







And to make it an absolutely perfect day, the Nationals won on a walk-off home run in the bottom of the ninth inning. Wow.



I didn't get sad thinking about you. Mom said I wasn't in the best mood, and I wasn't admitting to being upset.

I did get sad on Monday, though. I picked up our mail when I walked into the house. There was a small envelope from Chai Lifeline. That is a group that sends everyone something on important days... Jack and Joe get something on Hannukah, Mom gets something on Mother's Day, and I got a "World's Best Dad" refrigerator magnet for Father's Day.

Seeing that just killed me. It just took a day, that's all.

Today is Mother's Day.





I want to put on here a lot of the photos that I scanned for Mom's birthday. Here are some to start.

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.'"

We went to the beach for Mother's Day. Mom got to do her favorite stuff. Be with us. Go to Funland. Ride the rides. And of course, take pictures in the photo booth.