Wednesday, April 30, 2008


I think it was last year that I showed you a story about David Ortiz in Sports Illustrated. Yesterday I read an article about his teammate, Manny Ramirez, in the USA Today.




Jack is still a huge Red Sox fan, and Mom, Joe and I definitely like Manny. This was my favorite part of the article.

"My biggest dream is not to hit 500 home runs or 600 or 700," says Ramirez, who turns 36 on May 30. "My dream is for God to give me enough health to watch my kids grow up, have a beer with them, watch them graduate. That's my Hall of Fame.

"You might hit a home run or whatever, but getting home and having your kid tell you, 'Daddy, I love you,' that's priceless."

Those words might seem at odds with Ramirez's image as a goofy character without a care in the world, an impression bolstered by his baggy uniform, flapping dreadlocks and lapses as a fielder and baserunner. But current and past teammates, as well as others close to him, insist that snapshot doesn't fully capture Ramirez.

Tuesday, April 29, 2008


Here is more on Tyler Jenkins. This time he is on a local Washington, DC television station. This is a better segment.

We got the Fanconi directory yesterday from the Fanconi Anemia Research Fund. I think I am going to write an email to the family support coordinator and suggest she reach out to Tyler's family. I am sure that Cincinnati Children's has given them resources, but just in case.



Martinsburg Boy Diagnosed With Rare Blood Disease

Tyler Jenkins is a typical ten-year-old, he loves video games, watching football and eating junk food. But Tyler is dealing with something so atypical and his parents are sick with grief.

"I just don't understand. He's ten-years-old. If I could trade places with him, I would. I've been here long enough. Just to make him better," said Charles Jenkins, father.

Tyler was diagnosed in March with Fanconi Anemia, a genetic blood disorder that leads to bone marrow failure. "I'm real sad about it. I don't want to go through it but I know I gotta go through it to get helped," said Tyler. "I just cried and cried for days because I'd already told this was much worse than leukemia," said Tyler's mother Kelly.

Tyler was born with deformed thumbs, a symptom of the rare disease, and he recently developed skin discolorations. He is constantly tired. His blood doesn't clot properly and a simple cut could kill him. His parents had to pull him out of school to keep him safe. "School is my worst enemy," Tyler said.

Tyler's little sister Kaelyn may have the disease too. Test results are pending. Kaelyn is likely Tyler's best shot at a bone marrow match. In the meantime, the family is praying and living each day the best they can. "We just try and cherish every day we have with him because it might be our last," said Mr. Jenkins.

The family will move to Cincinnati soon where they'll spend six months at the Children's Hospital. It's one of two hospitals in the country that treats people with this disease. Tyler will undergo chemotherapy and radiation there and will be kept in isolation.

TYLER ROSS JENKINS FUND
BANK OF CHARLES TOWN
111 E. WASHINGTON STREET
CHARLES TOWN, WV 25414
304-725-8431WWW.MYBCT.COM


Monday, April 28, 2008


We went to Cleveland for the second half of your brothers' spring break. Mom took them to Rehoboth Beach for most of last week and then on Friday we went to Cleveland. On Friday night we went to see the Indians play the Yankees (for Joe, who loves the Yanks); on Saturday we went to the Rock and Roll Hall of Fame (for Jack, me and Mom, who love Rock and Roll); and on Saturday night we went to visit Mom's college roommate and great friend, Jane Esselstyn and her kids.

As always, I was thinking of you and remembering my past visits to Cleveland. I thought about the last two times I was there. One was on my way back from dropping the cells off with Dr. Hughes in Detroit. I had driven from New York City through a hurricane to get the biopsied cells to his lab for analysis. I then turned right back and headed towards Mom in New York, only stopping for about 4-5 hours sleep in a hotel off the highway near Cleveland. And the last time was on my way back from Minnesota after your transplant. You, Jack and Mom flew on the Honeywell corporate jet home, and I drove our green Isuzu Rodeo, with our stuff piled up inside, back to DC. My first stop was in Madison, Wisconsin and my last stop was in Cleveland, where I had dinner and stayed overnight with Karen and Chip and their brood.

Karen is still in China. Mom got an email from her yesterday. Mom remembered the trips we made to Cleveland for Karen's wedding and Jane's wedding. What we didn't talk about was the stop we made there on the way to Minneapolis. Strangely, when I got online today I got an email alert (I'll explain those later) that gave me this link...

http://www.nytimes.com/2001/07/01/magazine/01FANCONI-JOURNAL.html?ex=1209528000&en=2175d59d0515b521&ei=5070

Google must have just indexed the New York Times archives from 2001 or something. It was a weird coincidence. Mom's description of "what felt like the longest walk around any block ever," really brought me back. I always think that if I ever have to remind myself that I have the courage to do anything, I will think back to when I removed your respirator so you could die. Mom has done some incredibly brave things and that walk is one of the bravest.

This trip had no great drama, but it was great all the same.



We went to Jacobs Field, where Mom and I went to a game the weekend of Karen and Chip's wedding, and watched a decent slugfest that the Indians ended up winning 6 to 4. Joe was just a tiny bit disappointed. Oh, and the park is called Progressive Field now.

I always find it a bit painful going to a ballgame during Passover. No hotdogs or beer. I actually had a kosher hotdog without a bun. That stunk. After the game they had a terrific fireworks which we all enjoyed.

I told you a few years back how the Rock and Roll Hall of Fame sued Jeffrey, David and me for trademark infringement. That was all pretty silly and definitely not "rock and roll." We changed the name of the organization and the website to Jewsrock.org. I had never been to the Rock and Roll Hall of Fame even though I love rock, had been sued by them and once donated something from XM to the place for display. So I guess it was time.

They had a lot of great exhibits and movies. I know that Jack really enjoyed himself. Joe, not so much. But he was a champ and hung in there. We were there for close to 5 hours and we could have used an additional day.

After the Rock Hall we headed to Jane's family's home in the hills of northeastern Ohio. The property is called The Knob. You were there once with Jack and us, and you had a blast. You played the homemade "Toss Across" game they have. You threw bean bags through holes in the wood board.

I showed it to Joe and of course he starts whipping the beanies like they were baseballs. I think he was showing off for Crile, Jane's oldest daughter. I told him that a good method was the underhand toss. Nothing doing.

I guess I've been to the Knob twice before. Once was with you and the other was for Jane and Brian's wedding. I remember that you and Joe hung out at Karen's mom's house during the wedding. The property has been in Jane's family forever. The road that we got on when we exited the highway was called "Crile Road." Crile is Jane's grandmother's family name.

In the bathroom on the first floor of the house there is a photo of Lou Gehrig. There is an inscription from Lou's wife Eleanor to Jane's grandfather. She says that of all of the people who cared for her husband, Lou loved Jane's grandfather the most. He was a doctor - but also an athlete - big and strong like Lou. It truly is an amazing personal tribute and piece of history. It is a cliche, but they don't make heroes like Lou Gehrig anymore. He was an amazing baseball player who just let his performance on the field do the talking. His "quiet" greatness would make a good role model for Joe.

Jane and her whole family (for generations) are just so interesting and impressive. When we were there, Jane showed us a book that her mom and dad just wrote. It says that to live a long and healthy life you shouldn't eat anything with a mom or a face. Yuck. That means no meat or dairy. People who eat like that are called "vegans." Since I can't eat dairy and Mom doesn't eat meat, it makes a lot of sense for us. We're going to try it. We'll see how long we can stick to it. Don't worry. Your brothers still get to eat whatever they want.

Jane is always a delight to be around. She is full of life. Her kids are great too, and it was nice to get to know them. Jack really enjoyed hiking through the woods and learning stuff from Jane. She used to be an Outward Bound instructor and knows so much about the outdoors. Unfortunately, Brian was busy and wasn't able to be there with us over the weekend.

We finally headed out on Sunday morning after some rock climbing and zip lining. On the trip back Mom and I spent some time listening to a book on my iPod called Love Is a Mix Tape by a guy named Rob Sheffield. It is about Rob's wife Renee, who died suddenly of a pulmonary embolism. When I first put it on I was worried Mom was going to say, "not another thing associated with your fixation on death and dying." But she didn't. She actually really liked it. The way Rob describes his love for Renee and their life together, and his sadness at her dying is wonderful. It made me think of you and it made me think of Mom.

Listening to a book really makes the trip easier. We did run into traffic right outside of Hagerstown, Maryland. The cars on the highway just stopped. We listened to the radio and learned that there was an accident on the other side of the road. We figured that it must have been pretty bad considering all of the emergency vehicles that were on the scene. Mom was just praying that the guys wouldn't have to see anything terrible. They cleared it all before we got to the scene.

While we were stopped, I noticed a car next to us that said, "In Memory of Ashley Maria Bellosi 1984-2007" on the back window. The windows were all tinted really dark. You couldn't see the people inside. I was wondering if Ashley's parents were inside.

I think the whole phenomenon of putting that kind of thing on your car, which is totally new, is interesting. I wouldn't do it (though your initials HSG make up the license plate on the Vespa), but it does allow people to honor their loved ones in a way they want - very public. I looked up Ashley Maria Bellosi when I got home and what I learned was so sad and tragic. Ashley was a beautiful young woman in Baltimore who last year was beaten to death by her boyfriend.

Long illnesses, sudden or violent... it all stinks.

Maybe this whole thing is my "In Memory of Henry Strongin Goldberg 1995 - 2002."



Here is a news story about a kid, Tyler Jenkins, who has FA. The weird thing is they talk about how rare the disease is, but there is another kid Devin Fales, who has FA and if I am not mistaken, lives near Tyler's home. We drove through that area yesterday on our way back from Cleveland. Those parents should get together.



They are only 16 miles away from each other. Here is the last post that Devin's mom wrote.

April 26, 2008 at 09:54 PM EDT
Hello to anyone who still checks on Devin, thank you for being faithful. I don't have much to say because Devin has been very healthy.

He did get his second round of shot for the HPV vaccine so only one more to go. He will also finish he other vaccines in October. That will be two years after transplant, can you believe that. Last summer we still had to watch the activities Devin wanted to do but this year we have no limitations. Devin plays hard all day long, he was outside all day today playing. He never could have done that before, he would tire out so easily. we are in the process of looking for a good hearing doctor because Devin is having a hard time hearing. If you know of a good doctor please let me know. He has an appointment to see a dermatologist because he has two moles we want looked at, they have changed since transplant so we want to make sure they aren't cancerous. He needs to have his counts checked so when we get those back I will let you know how they are. Then the big thing is getting him to grow. This summer we are going to look into his growth hormones.

Devin went to his first drag race of the year friday night. He loves drag racing and he was excited to have the season start. Well not much else to report here. Thank you for checking in on Devin, sorry for the lack of posts but he is just doing great. Love from the FAles' family
That should give Tyler's parents some needed encouragement. Devin's parents should talk to Bob Sacks, Dani Sack's dad. When she was alive she had hearing issues. They live in Columbia, Maryland.

Tyler is going to be transplanted in Cincinnati. In the video, his dad is understandably upset, but they are doing what they can and also the right thing by taking him somewhere that has great Fanconi transplant expertise.

If his sister is a match, then he has a great chance to be okay. I definitely don't like the last line of the story. Seems pretty harsh.

Tyler looks strong. He'll come out of it all right - Just like Devin.

http://your4state.com/media_player.php?media_id=17813#




Martinsburg Boy Diagnosed With Rare Blood Disease

Reported by: Sarah Hopkins

Sunday, Apr 27, 2008

MARTINSBURG, WV – A little boy in Martinsburg is the victim of an extremely rare genetic blood disease.

There are only 3,000 cases of Fanconi Anemia worldwide; 1,000 cases in the United States, and in Martinsburg, there is one: 10-year- old Tyler Jenkins. 10-year-old Tyler Jenkins’s life has changed drastically.

Since he was diagnosed last month with Fanconi Anemia, a rare blood disease that affects the bone marrow, he has been pulled out of school and kept isolated from his friends.

“It makes me kind of sad because I don't have anybody to play with or anything,” said Tyler Jenkins, diagnosed with Fanconi Anemia.

There are several physical signs that Jenkins said their doctors didn't recognize. They always knew Tyler had deformed thumbs and skin discolorations. Still, learning the news was a shock.

“I just dropped the phone, and I fell and I just sat there and I cried and cried and cried,” said Kelly Jenkins, mother.

“I can do everything in my power to make to try to make it better, but you know, only God knows what's going to happen, and I don't have no control over it, no matter how hard I try,” said Charles Jenkins, father.

It has been overwhelming for Tyler.

“It just made me really sad, and I just wanted to cry for the rest of my life until I got better,” said Tyler.

Tyler spends most of him time playing video games; one of the few things he can do that doesn't tire him out, while he waits for a trip to Cincinnati to visit one of only two hospitals in the U.S. that treats people with his illness. The Jenkins’ will have to pick up and leave for six-months while Tyler undergoes chemotherapy and radiation, a struggle for a family that lives week-to-week.



“We are pretty much just trying to get by-however we can,” said Jenkins.

While they have been working hard to raise money, the Jenkins said the disease is so rare and the bills are so high that it's difficult. No matter the cost, the Jenkins said they are in it together, even their five-year-old daughter who could soon be donating her bone marrow to her brother.

“He loves me, and I don't want him to get sick no more,” said the daughter.

In Cincinnati, Tyler will be kept in isolation and under constant evaluation. Doctors said depending on how the treatment goes, his life expectancy is anywhere from a few weeks to years.

Thursday, April 24, 2008


The guys have spring break this week. Mom took them to the beach. I stayed home and worked. And fed Joe's fish, Potato Man.




Last Sunday morning we went on a tour of the new National's ballpark. I went to a game the week before with my boyhood friend Steve Feldman. It was the second game to be played there.



It wasn't as cool as the tour of Fenway that I took, but hopefully it helped get the guys excited for Nats baseball. Maybe it did. Here are some of Joe's drawings from this week.





Also last weekend, Joe and I went to watch the Caps play in a Stanley Cup playoff game. They won. It was great.





Friday, April 11, 2008


Your brother made the cover of the school newsletter. I get this thing every week and have never opened it. Mom told me about it. We get so many emails from school I rarely look at anything unless it has a subject line that says, "Joe is making monkey faces during circle time." Haven't gotten that one just yet, but close.



Wednesday, April 09, 2008





Blanchard students give young transplant patient a big send-off

By Melody Brumble
mbrumble@gannett.com

BLANCHARD — Huntur Newton shied from the spotlight on the day dedicated to him.

Classmates at Blanchard Elementary School celebrated Huntur Newton Day on Tuesday as a send-off for the kindergartner who'll undergo a bone marrow transplant to treat a rare kind of anemia.

"He said he didn't want to be in front of anybody (Tuesday)," Raelene Newton, Huntur's mom, said as her son eyed gifts presented to the family.

His younger sister, 4-year-old Madalyna, was less shy. She peered into a tent-like playhouse given to the family and jumped into a battery-powered Dodge Viper race car Huntur received during the assembly Tuesday morning.

Huntur has Fanconi anemia, an inherited condition that causes a host of physical problems. At its worst, the disease causes the body's bone marrow to stop producing blood cells. The disease also makes people more likely to develop cancer.

Estimates of the number of people living with the illness worldwide range from 450, the number registered with the nonprofit Fanconi Anemia Research Fund, to about 1,000 in a registry maintained by a Rockefeller University researcher.

Huntur's youngest sister, 4-month-old Morgan, will donate bone marrow for the transplant.

"We told him he has sick blood and his sister is going to give him new blood," said Huntur's mom. "He's more concerned about having good food."

She and her husband, Cody Newton, have tried to give Huntur a normal childhood. A mask over his mouth and nose is the only concession to his upcoming surgery. He must be free of infection for the transplant to take place.

"We try not to baby him," Raelene Newton said. "For example, his scissors. He has a special pair of scissors because of a problem with his thumbs. But we got him to try regular scissors, and he uses those."

The Newtons said they're grateful for support from the community.

Pickett Industries will fly the Newtons to Minneapolis on Sunday and return to pick them up about three months from now.

Employees of the Caddo sheriff's office, where Cody Newton is a deputy, donated enough leave time that he'll be paid for the entire time the family is in Minnesota.

Individuals, organizations and the school have raised more than $8,000 in the past month to help with the family's medical and living expenses.

Delta Delta Delta Wish Upon a Star provided gifts based on Huntur's wish list for his family. Teacher Cindy Bickham. who heads up the organization, said it took some prying to get Huntur to come up with his own three wishes.

Fourth-grade teacher Frances Tyl and her husband donated a toolbox to be raffled, raising more than $4,000. "We knew we couldn't take this disease from Huntur, but we knew we could help by raising some money," she said.

Tuesday, April 08, 2008


Happy homecoming
Boy returns from blood disorder treatment


By Airan Scruby, Staff Writer
04/07/2008

Staff Photo by Keith Durflinger

PICO RIVERA - After more than five months of intense medical treatment in Minnesota for a rare blood disorder, 11-year-old Gregory Ramsey is back home.

Gregory received a hero's welcome at Los Angeles International Airport on Saturday night. Gregory and his mother, Mary Ramsey, were greeted by his grandmother and rode home in a limousine donated for the night. The family was escorted by sheriff's Pico Rivera Station deputies to meet extended family members and a house decorated for Gregory's return.

"It's been a long time since I've seen him smile so much," Mary Ramsey said.

According to sheriff's Lt. Joe Chavez, Capt. Michael Rothans asked him to organize the escort after reading about the family in the newspaper. The deputies who participated in the escort volunteered their time Saturday night.

"Here's a little boy fighting for his life, and Capt. Rothans felt compelled to do something," Chavez said. "Just bringing him home like the hero that he is, it's worth it."

Although his medical treatment is far from over, Gregory is now recovering from a bone marrow transplant received in December for his Fanconi anemia, which can cause heavy bruising, a weakened immune system and, if untreated, is fatal.

To receive the transplant, chemotherapy and other care from doctors who specialize in the disease, Gregory, along with his parents and younger brother Christopher, traveled to Minnesota and lived at the Ronald McDonald House near University of Minnesota Children's Hospital.

The family was allowed to return home when Gregory's blood tests and other indicators showed his body was initially accepting the new bone marrow and producing enough white blood cells.

"He came home and yesterday he was playing piano," Mary Ramsey said.

She said the homecoming has meant adjusting to life away from the hospital, and preparing for more treatment at Childrens Hospital Los Angeles.

"Things are going relatively well," Ramsey said. "But we're not out of the woods yet."

Gregory will have to return to Minnesota in June for a checkup and will continue to have weekly appointments with a local doctor. His body is especially susceptible to infection in the year following his transplant, but he will continue regular meetings with his Minnesota medical team for five years.

Although he will not be able to return to school this year because of his weakened immune system, his brother will go back to Brethren Christian School next week.

His parents will return to work and family members will share the task of taking Gregory to doctor's appointments and supervising his home schooling.

Gregory's father, Darren Ramsey, and his 8-year-old brother returning home by car, and hope to make it back to Pico Rivera by Wednesday or Thursday.

"We're somewhere in Nebraska," Darren Ramsey said Monday. According to him, leaving the supervision of the hospital is frightening but exciting.

"It was scary leaving Ronald McDonald House, but at the same time it was a happy thing," Ramsey said. "I just want to go home."

While the family has been in Minnesota for Gregory's treatment, friends at home have organized fundraisers for an expected $80,000 in medical and travel expenses, above what insurance will cover.

Lezli Brown, a teacher at the boys' school and family friend, said students at the school raised more than $800 in a penny drive, and a local church collected more than $400 for the family.

A pancake breakfast was also held and an ice cream sale and raffle is scheduled at Mary Ramsey's office.

"There's an ongoing need to help pay those medical bills," Brown said.

For information on the Ramsey family, to leave them a message or to donate, go to cota.org

airan.scruby@sgvn.com

(562) 698-0955, Ext. 3029

Monday, April 07, 2008


I made a book for Papa Sy with photos that I've taken at St. Michaels over the years. It was nice that it came just as he was having his procedure done for his heart. He is out there right now so he doesn't have to depend on pictures to enjoy how beautiful it is.


Sunday, April 06, 2008


Mom told me that when she was a little girl she was scared of the water. Joe is keeping the tradition alive.

We have been "threatening" to take him to swimming lessons and we finally got the courage to follow through. We took him to see Trina and Rodger who are giving lessons at the Lab School. Jack and you took lessons with Trina a long time ago. It just isn't safe to have Joe around the pool at Nana and Papa Sy's and not be able to swim.

Getting Joe from the parking lot to the pool took a bit of effort. He punched, scratched and spit on me. It freaked out Mom. I took his abuse, but I'll make him pay - somehow, someday. Maybe I'll show this video at his rehearsal dinner.




Friday was crazeee. In the morning, Jack, Joe, Mom and I met Jack's fourth grade teacher, Mrs. Klar, down at the Sumner School which is across the street from National Geographic. Jack had won the right to represent Jewish Primary Day School in the Washington, DC semifinals of the National Geography Bee. He was competing against kids from schools all over the city, including all of the elite private schools, like Sidwell, St. Albans and Maret.



Joe was wearing his JPDS shirt to cheer on Jack. That was very sweet and cute.

Jack understandably had been really stressed out the past few weeks leading up to this, but he was pretty cool and calm the day of the competition. He got a good night's sleep, which is key.

When they called on him to answer his first question, my heart was pounding so hard in my chest. I told him afterwards that I really felt connected to him, and I was hoping that I was more nervous than he was. What I thought was cool was that after answering a few questions he got into a groove and I sensed that he started to "want it." He was confident. We had talked all week about how it was great to have just gotten to this point. I think that was forgotten once he got there. He wanted to win.

He made it out of the qualifying round and into the finals. He was the youngest kid there. He did well, but as you can see on the video he boots an easy question. I talked to him afterward and he just thought it couldn't be that easy. I can see the gears cranking in his head.

One other thing I saw was how mature he acted. When one of the competitors next to him missed a question he would give them words of reassurance. That blew me away, and made me more proud than anything. Prouder than the fact that he ended up getting 6th place overall.

In the end it was great for Jack to have just gotten to the semis. He represented himself and JPDS incredibly well.



After we went to The Palm to celebrate, all of us drove over to Washington Hospital Center to drop off Mom. Papa Sy had gone there that morning to have them look at his heart. As it turns out, one of his arteries was blocked so they put in a stent to let the blood flow. He came through all that like a champ. He is back out in St. Michaels now with Nana.

And the last thing on Friday was a dinner for Mom's birthday. We went out with Aunt Abby, Uncle Andy, Aunt Tracey and Uncle Andrew. We had a great time, but I was bushed. Even with a visit to the hospital I think Mom had a great birthday. The guys got her a pair of pink converse sneakers. Tomorrow I'll show you what I got her.

Love you.


Here is your no-good brother Joe on his way to bed. This is pretty much what we have to go through every night to get him upstairs to go to sleep. And no, this isn't in slo-motion.




I saw this article after I wrote the earlier post. Are they going to ban "Luxury Babies." All of this is craziness.


Three Kids? You Showoffs.

By Pamela Paul
Sunday, April 6, 2008; B02

My husband and I are getting ready to do what many couples in these brink-of-recessionary times would consider unthinkable. No, we're not buying a Martha's Vineyard retreat or planning a month in St. Bart's or eco-decorating our house.

We're planning to have a third child.

What shocks people, when we tell them, isn't the thought of hauling three kids onto a place for a vacation, or even the idea of coming home every night to a houseful of runny noses and homework assignments. What gets them is the sheer financial audacity. Raising kids today costs a fortune. Last month, the Department of Agriculture estimated that each American child costs an average of $204,060 to house, clothe, educate and entertain until the age of 18.

But to me, a family with just two kids seems minimalist, and even a bit sad. Back in the 1970s, when my husband and I were born, sprawling families were more common. My husband had two sisters and, following a Brady-Bunchy set of remarriages in my family, I wound up with seven brothers, real and step. I've always fantasized about creating a "Meet Me in St. Louis"-style household of my own, with children constantly underfoot and enough relatives around to skip to my lou en masse.

And yet nowadays, people seem aghast if a couple wants more than two children. When Elana Sigall, a 43-year-old attorney in Brooklyn, was pregnant with her third, people came up to her constantly, she said, to admonish her: "You've got a boy and a girl already. Why don't you just leave it alone?"

What's worse, the desire to have another child opens one up to charges of elitism and status consciousness. In many major U.S. cities and their suburbs -- especially New York, where I live -- having three or more children has now come to seem like an ostentatious display of good fortune, akin to owning a pied-Ã -terre in Paris. The family of five has become "deluxe." Last year, novelist Molly Jong-Fast mused in the New York Observer, "Are people having four or five children just because they can? Because they feel that it shows their wealth and status? In a world where the young rich use their $13,000 Birkin bags as diaper bags, one has to wonder."

We not only wonder, we marvel, we get jealous, we gawk. "Having three kids in the city is a way of showing off, absolutely," says Elisabeth Egan, who, like many families she knows, moved out of New York to the suburbs of Montclair, N.J., to manage the feat. "A third child in the city is definitely a luxury good."

It's true that, following in the designer maternity clothes of such fecund celebrities as Posh Spice (three kids) and Angelina Jolie (speculatively six), most of the people going for a third baby are well-heeled moms and their high-salaried husbands. A February analysis of Current Population Survey data by the Council on Contemporary Families found that in the past 10 years, the top-earning 1.3 percent of the population has seen an uptick in families with three or more children. According to the National Center for Health Statistics, 12 percent of upper-income women had three children or more in 2002, compared with only 3 percent in 1995.

There's no question that it takes a lot more money to bring up baby nowadays. Many parents would scoff at the Agriculture Department's humble figures. When you get into the nitty-gritty, the price of kids feels more like a million dollars a pop.

Consider raising a single "luxury" child. By luxury, mind you, we're not necessarily talking hedge-fund rich, merely able to afford and "raise right." And the pressure to do that, even if you're not uber-wealthy, has become overwhelming. From the moment the heartbeat blinks across the sonogram screen, Big Baby starts in with its pleading and conniving: I'm your child! How can you spare any expense? Don't you care?

For a couple's every conceivable wish or worry, the parenting industry knows the precise formula of guilt, fear, hope, love and desire that will empty the parental wallet. Rather than fret about spending too much money, most parents these days are consumed by the anxiety of underspending -- the fear that somewhere, some other parent is offering her baby an educational toy or child-development class that will propel the toddler ahead, and that if you skimp, your child risks losing out and falling behind.

So parents quickly adjust to the demanding realities of the child-rearing industry. Baby showers have replaced bridal showers as the blowout du jour; American women today have an average of three. The accompanying baby registries have mushroomed into a $240 million business, according to research firm Mintel International Group. Between diapers and bouncy seats, parents can count on spending at least $6,500 on the first year of baby gear alone. "You walk into Babies R Us, and you're just overwhelmed," recalls Brooke Houghton, a 35-year-old mom from Chicago who said she ran out of the store in panic after 15 minutes. "There was just so much equipment I hadn't even considered."

Once a new mom's maternity leave (if she's lucky enough to get it) is up, a nanny or quality day care is in order. In upscale urban areas and tony suburban enclaves, where luxury families are flourishing, that can translate to $800 a week for child care alone. So-called high-end nannies -- those who hail from licensed agencies and come equipped with working papers and even driver's licenses -- can cost more than $50,000 a year on the books. And to think, some deluxe families hire two. After all, how can one nanny juggle a set of twin infants and a 3-year-old, or ferry three kids under 6 to their various play dates, preschool programs and lessons?

For parents who both work full-time -- or those otherwise occupied with family, charitable and social obligations -- child care doesn't end when the children enter school. If you calculate nanny pay on top of $26,000 annual private school tuition (eventually multiplied by three), you're talking $140,000 just to keep your children safe and reasonably occupied while the sun's up. Once children are a bit older, there's the battery of ballet, piano, squash (offbeat sports viewed as an inroad to Harvard), and the vehicles needed to get there. Hyper-vigilant child safety laws mean that up to the age of 7, children are boxed into full-size or booster car seats. Try jamming three of those into the back seat of a compact car.

Most families simply can't afford all this. And surely it can't all be necessary. Didn't Benjamin Franklin grow up to be a statesman, inventor, printer, author and political theorist without having his vision enhanced by a Stim-Mobile or his sense of spatial relations improved by Baby Einstein Numbers? Somehow young Ben managed to thrive and prosper even though the Teddy bear had yet to be invented.

Today's American children, by contrast, get an average of 70 new toys a year, yet child development experts agree that the best toys are simple playthings such as blocks, balls and figurines that a child can play with over and over, in new ways. When I was growing up, a sticker was something precious that a stationery store owner would carefully cut off a roll and sell for 25 cents. Today, a made-in-China jumbo book of 600 stickers can be bought at CVS for $6.99. Something has been lost in this ostensibly positive development.

Far from inducing feelings of inadequacy, saying no to the parenting consumer culture should make parents feel all the wiser. And conversely, no one should have to feel that they should refrain from having a child for fear of being accused of snobbery.

Since her own pokes at deluxe families last year, Molly Jong-Fast has become a mother of three herself, having recently given birth to twins. "I don't blame people for having more, if they can," she told me. "If we had unlimited resources, I think we'd have more children, too."

As for my husband and me, we hardly have unlimited resources, but we're still planning to go forth and multiply in the big city. The way we figure it, one day our children will be grateful for what we didn't give them -- and what we did for them instead.

Some may call this rationalization or flat-out denial. Perhaps we mere mortals of the upper middle class, preparing to haul out the bassinet and the Exersaucer for a third go-round, should question our sanity. But we're banking on proving the naysayers wrong.

pamela@pamelapaul.com

Pamela Paul is the author of "Parenting Inc.: How We Are Sold on $800 Strollers, Fetal Education, Baby Sign Language, Sleeping Coaches, Toddler Couture, and Diaper Wipe Warmers -- and What It Means for Our Children."



In England, where Aunt Abby, Uncle Andy, Michael, Rachel, Josh and Noah are moving this fall, they are passing laws to make it okay for parents to help save the lives of kids who, like you, can be saved by having a matched sibling transplant.

There are some people who don't want to let parents and doctors do this. The article that I posted the other day from the English newspaper was written because there is controversy about the laws. The mom in the article, Donna, said that no-one over there stepped up to help her and her son Jamie with FA the way Dr. Hughes tried to help us with you, and the way Dr. Verlinsky saved Molly. She then had a baby "the old-fashioned" way and it wasn't a match for Jamie. Understandably she was bummed the baby, Donatella, wasn't a match - but it doesn't mean she is any less loved.

We always wanted to have 3 kids, partly because that is how many kids were in Mom's family and they were really happy growing up. We were going to have more babies after you were born. Having Jack or Joe save your life would have been amazing. We don't love them any less because they couldn't. It is not an issue. Not even on the radar. The blame that parents carry around is for themselves. There is always something you wish you could have done.

I get so tired of the "spare parts" baby thing. Reporters who use it are lazy, and politicians and other people who use it are demagogues. I'll tell you later what a "demagogue" is. That is a high school vocabulary word. People have babies for so many reasons... in the old days people had a lot of kids to help work in the fields, to carry on the family name or to take care of them when they got old. Nowadays some might have a baby to save a failing marriage or because of status. So who is to judge.

The other day I got an email from Jillian Moreno's dad. His job is to think, teach and write about medical ethics and stuff like using pre-implantation genetic diagnosis to identify a potential matched sibling donor. He submitted a letter to the editor of the Washington Post responding to a crazy thing that someone wrote in the paper.

Human-Animal Hybrids and Other Neoconservative Nightmares
Jonathan D. Moreno

My daughter’s schoolmate, Henry Goldberg, died when he was seven years old. Henry was born with Fanconi Anemia. Hoping to save his life with a transplant of healthy, compatible cells, his parents attempted another pregnancy. The placenta that nourished that baby could be used to save Henry’s life. Sadly, Henry never did have a sibling with the needed blood type. Beloved to his friends, Henry was an invariably cheerful little boy. I will never forget the moment in our kitchen in December 2002 when my daughter got a call telling her that Henry was gone.

To help save future Henry’s, in vitro fertilization techniques could make it more likely that a baby with a compatible blood type will be born, by selecting only certain embryos for implantation. Opponents claim that this approach undermines human dignity, yet Henry’s little brother is treasured, and they do not explain how Henry Goldberg’s death enhanced human dignity.

This issue is part of a bill before parliament in London that has turned the usually sensible British system of fertility science into a political crisis for the Brown government. Among other provisions, the bill would permit the preimplantation genetic diagnosis in IVF clinics that could provide “savior siblings” with compatible blood types for children like Henry who have life-threatening conditions.

The law would also formalize a practice that is already permissible in Britain, creating embryos that mix human and animal material for medical science. Human DNA is put into cow eggs with the nucleus removed so that research can be conducted on diseases like Alzheimer’s and Parkinson’s. Animal eggs are used because human eggs are so difficult to obtain. Although critics like to call the products of these mixtures hybrids, conjuring up images of centaurs, the only non-human genetic material left in the embryo is the one percent that is outside the nucleus. The resulting embryos would not be allowed to develop beyond 14 days. Mixing human and animal genetic material is not new in medical science. Among other achievements, it made possible the mapping of the human genome.

These life and death matters don’t fit on a bumper sticker. So the casual reader could be forgiven for being startled by a passage in Michael Gerson’s Washington Post column about British politics last week (“Tories Who Can Teach McCain,” March 28, 2008), when he mentioned legislation “that would allow the moral monstrosity of animal-human hybrids, as well as the creation of ‘savior siblings’ who would have their genetic material harvested for ill children.” Those not sufficiently horrified by these loaded descriptions were immediately aided by Gerson’s assertion that “in Britain, the slippery slope has become a vertical drop, with a respectable, noncontroversial, scientific barbarism at its bottom.”

How far have our gallant allies fallen that neither the Labour nor the Tory leadership perceives the end of civilization at the end of the path they shall soon tread? Gerson’s account would be comical if it weren’t so distorted and so remarkably synchronized with opposition from Christian conservative groups now pressuring members of Parliament.

At end of the day I am wondering who the monsters are. And, when all has been said, what would we tell Henry?

Jonathan D. Moreno teaches medical ethics and the history and sociology of science at the University of Pennsylvania.

I am not as smart as Jonathan and can't make the argument as well as he can -- but to all those people who don't want to let doctors help parents have babies who will save the lives of their sick kids, I would just ask them to read this article that we got this week in the Fanconi newsletter.





Thank god we live in a country where we at least have the chance. If only we just had a little more time to make it work then, I wouldn't have to be writing these letters now.