Dear Henry

2009-07-17T09:23:00.001-04:00

Mom went up to get Jack at camp, so it is just me and Joe. When I got home from work last night he wanted to play charades. I can't remember his first turn, but it was a movie and three words in the title and I just couldn't figure it out. It kept looking like he was flying, but that wasn't in the title.

Then I went. Even with my great acting and mime skills, I couldn't give him good enough clues to guess my movie, Monster Versus Aliens.

When it was his turn, he went with a book with two words in the title. I was a little suprised by this, 'cause we usually stick to movies. I figured a book would be easy since one of the words in the title had to be "baseball" or "hockey."

His first clue made had me guessing, "sick," and "dying." He was dragging himself across the living room clutching his chest and then falling to the ground. We decided to skip straight to the second word in the book's title. Joe made muscles and swung an imaginary baseball bat. I guessed "Babe Ruth" even though that is two words.

Then Joe found a book or magazine on the coffee table and put his fingers over some of the printed words on the cover, so that the only word showing was "children." So then I started to try and guess books with a title "____________ Children."

Joe said, "no, no, no." Then he ran into the dining room and picked up one of the copies of Mom's manuscript and pointed to the title.

Saving Henry

I told him that it was hard for me to figure out "Saving" when the clues he'd given me for the first word had to do with "sick" and "dying."

I did like the "Henry" clue, though. Don't know how I missed that.

2009-07-17T09:06:00.000-04:00

You were in my dream last night. You were in the hospital. You looked gaunt and post-transplant. I was in scrubs. There was a doctor with me. You were big but it was almost like you were in an incubator - the ones they have for preemies. You were curled up. We were testing your breathing - and you were passing the test.

I think part of it was because I heard about 2 minutes of an interview with J.K. Rowling last night on TV. She is the woman who wrote Harry Potter. If I heard her right (and I may not have), she was talking about her fears of when her daughter was born. She had that normal parental worry that made her check to make sure her daughter was breathing when she was sleeping. That was part of the inspiration for the dementors. You remember them from the Harry Potter books - they suck the life right out of someone.

I think watching you do the pulmonary function tests in Minnesota (I don't think Mom was with us) played a part in the dream too. Mom went up to pick up Jack this weekend so I was sleeping alone. I think that contributed to the dream as well. I should have had Joe sleep with me.

Twice in just a few weeks. I am glad you're showing up in my dreams. I'd prefer the healthy Henry, but I will totally take - and am happy with - whatever I can get.

2009-07-16T13:43:00.001-04:00

Hey, check this out - http://www.dearhenrymusic.com/. I bet they were bummed that DearHenry.org was taken. Oh well.

I'm gonna email them and see if they sell any merch. That's the groovy way of saying merchandise. I'd go for a bumper sticker or t-shirt. A good thing it is the kind of music I like or it would be a bummer. They play a bluegrassy cover of Sweet Child of Mine. I've talked about that song to you in the past.

The funny thing is that I almost hosted a show on XM featuring their kind of music. It would have been cool to play them on the radio.

2009-07-13T21:07:00.006-04:00

This is from a post I wrote a long time ago that I never published. I updated it a little tonight.

Speaking of divorce...

I just finished a book by a writer named Hayden Childs, who wrote about a favorite sad album of mine. Both the album and the book are called, “Shoot Out the Lights.”

The album was written and performed during a really difficult period for this musician, Richard Thompson, who was going through a divorce from his wife, Linda, who sings on the album.

When I read the dedication at the beginning of the book I perked up when I saw Hayden Childs thanking his "little nephew, Henry." But it was the sentence that followed that I read a couple times over.

"I dedicate this book to the memory of my baby brother Michael."

From what I found on the Internet, Hayden Child's brother Michael died in October last year - a few days before your birthday - in his early twenties. He was "profoundly retarded" and blind and a source of joy to his brother and his parents.

I often wonder how your brothers might choose to honor your memory, if at all, when they get older. Will ESPN do a profile on Joe – with video footage supplied by me of his early years on the diamonds of Northwest DC - as he prepares to capture his first American League MVP trophy, and talk about the fact that he wears your initials, HSG, sewn into his uniform (against league regulations).

I don't know if I've told you what a crazy hockey fan your little brother has become. He LOVES the Washington Capitals. There is one incredible player on the Caps, Alexander Ovechkin, who Joe (and everyone else in Washington) really loves. Ovechkin wears the number 8, which I know was your favorite number 'cause of Cal Ripken.

Well Alex Ovechkin lost his big brother Sergei when Alex was only 10 years old. Whenever Ovechkin scores a goal - and that's a lot since he is the NHL leader in goal scoring - he kisses his fingers and points them to the sky to let his brother know he is thinking of him, and scoring for him.

Joe understands and appreciates what Ovechkin is doing. Joe is so passionate about the Caps that he dislikes any team that has the temerity (I'll explain that word later - I just saw a cool site called Wordnik which gives good definitions and other stuff) to beat them. Here is some of his artwork inspired by the Pittsburgh Penguins beating the Caps in the Stanley Cup playoffs.

There is a player on the Penguins whose name is Sidney Crosby. His nickname is "Sid the Kid." You'll notice your creative brother Joe figured out a good way to heckle Crosby - even though Joe's spelling differs from mine a bit, one poster reads, "Sid the Kid Sucks a Pacifier."

And maybe Jack name a character Henry in the hit sitcom he writes, directs and stars in. Perhaps, he’ll mention you when he picks up his Emmy. Lately, he says that he'd like to be a doctor and I don't doubt he could do it if he chooses that path. I hope it doesn't take that long, but he could end up curing Fanconi anemia. Wouldn't that would be a sweet way to honor his big brother and your memory.

But as we always say, it is up to them. They should just do whatever feels right, and it might just be looking at old pictures and thinking about you.

2009-07-13T20:49:00.002-04:00

Thank you for this morning.

I woke up at 6:15 am, which is a little too early to wake up on a Saturday morning. I looked over at Mom, who was snoozing away, and I was determined to get some more sleep. I've been really tired lately. I started a new job - which I know I haven't mentioned, but I will - and I have been getting up a little past 5 a.m. I could sleep to 6 a.m. and be okay, but I am waking up early without an alarm because I want to get to work on time (the job is way out in Virginia) and because I am thinking about this new job and what I need to do.

Well this morning I decided I should catch up on the sleep I've been missing. So when I went back to sleep I had a dream and you were in it. That's why I said thanks. Thanks for spending time with me today. In the dream, you were post-transplant and sick, but you were okay at that moment. We weren't dealing with all your medical stuff. I don't remember many of the details, but one strange thing sticks out. We were driving in the car and you handed up to me from the back seat a huge clump, almost a round ball, of your hair. But you had hair - it had grown out - and this was just some extra that was in the back of your head. Not sure what that means.

I woke up at 7:15 am, an hour later. It was great to see you again. I haven't dreamt about you in forever. I bet I could look it up on here.

We are in St. Michaels for Nana and Papa's 50th wedding anniversary. I drove in by myself last night because Mom and Joe went earlier with Andrew, Tracey, Emma and Sam. For some reason I had the best drive. I was listening to Todd Snider, remember the Beer Run guy. I did something I don't normally do and that is play the same songs over and over. Joe used to do that a lot driving me a little crazy, but now that he is getting older he is expanding his repertoire. One of the songs is called Money, Compliments, Publicity.

Money, Compliments, Publicity (Song Number Ten)
From The Excitement Plan
A man once said that the pinnacle of success
Was when you finally lost interest
In money, compliments, and publicity
A noble enough idea I suppose
How on earth he does this heaven only knows
I know I need a lot more of all three of those
Before I'll ever have the nerve to turn up my nose
At any money, or compliments, or publicity

I'm broke as the ten commandments
Sometimes I'm harder to follow
I don't know whether to walk to school or take my lunch
____ wearing my watch, it's true
You may think you see a man who was looking for attention
But you're looking at a man who has lived through a little bit of
Poverty, some anxiety, some scrutiny

If I ever do get my money together
I'm gonna take care of all of my friends
I'll buy an island run a phone line
Call them tell them all to get fucked...oh
That oughta take care of them
Just be me and my money and my compliments and my publicity
Sing with me
Money and compliments and publicity

It's an issue for me
I went to see this therapist
She said just do the best you can do
Do the best you can do
I was hoping for something more specific

A man once said that the pinnacle of success
Was when you finally lost interest
In money, compliments, and publicity
Many years later
Another man will say all that again
But not for the sake of inspring men
But rather cause he's got nine songs and knows he needs at least ten
Before he can go back to town and turn them all in
And get the money, the compliments, the publicity
Money, compliments, and publicity
Money, compliments, and publicity...

Nana and Papa's anniversary is a big accomplishment. It is amazing that people can be together for that long. The ceo at my new job suggested that I walk around and introduce myself to people so I can learn about them and what they can tell me about the company. When I walk to their offices and I see photos of just kids and no husband or wife I get pretty sad. I end up thinking about how hard their lives have been and how hard they must be now.

Death is bad enough; we are truly fortunate not to know divorce in our family. Maybe it's all the hugging and mugging.

2009-07-13T20:45:00.000-04:00

I love it when you get mail. I guess no-one informed Mickey.

For me, that's okay. I like it when someone thinks you're alive.

2009-07-07T16:21:00.000-04:00

Yesterday was the anniversary of your transplant, otherwise known as your new birthday if things had turned out okay. We used to celebrate with a party and a cake. We were right to be hopeful.

I guess it was appropriate that we had a guest over for dinner last night, Jacob Grossman's mom, Rachel. Jacob has FA. He and his family live in Chicago. His mom is visiting Washington with Jacob's sister Talia. Jacob has had a really tough go of it. I think his mom told us last night that he is the only kid to have had both a bone marrow transplant and a kidney transplant. He must have 3 different birthdays then.

We gave Jacob an iPod iTouch from Hope for Henry. He is an interesting kid. He loves Barry Manilow's music. I can't think of a whole lot of 10 year olds who even know who Barry Manilow is. It was weird to read in the newspaper this morning that Barry Manilow is in Washington, DC right now.

We told Rachel that she is in Mom's book. Mom tells the story about how you got on the phone with Rachel and advised that they get a "Magic Closet" for Jacob's transplant room at Minnesota. Rachel had called looking for advice, pointers, support, whatever prior to their family going to Minneapolis for Jacob's BMT, and you insisted on talking to her when Mom was done.

Rachel told us last night that they indeed had gotten a room with a built in Magic Closet, and it constantly produced gifts for Jacob that helped him get through all those rough days in the hospital.

2009-07-06T16:21:00.002-04:00

We went to the beach last weekend to spend Fourth of July at Aunt Abby and Uncle Andy's beach house. Everyone had a lot of fun. So much fun, that Aunt Abby said to Mommy and me that we should do it every year - make it into a tradition.

I told her that it kinda is already. We've been coming every year since you died. This was our 7th year straight in Rehoboth at their house without you. I get kinda sad around the Fourth every year, and I think it is because of the anniversary of your transplant, and the family is together in one of your most favorite places without you.

You'll see that your little cousin Noah isn't so little any more.

2009-07-05T11:24:00.003-04:00

Mom and I both got this email the other day from Matt Brenner. You remember Matt from VarsityBooks. He is in the club of people who I think I look a little like, which includes Dave O. and Jeff Levy. When Mom and I talked to each other about the email, aside from being excited for Matt and Sarah, we asked the same thing, "what's the baby's name?" I thought maybe it is is a Jewish tradition/superstition that you don't announce the name until the bris. Other than that, we couldn't figure it out.

Then we got a call from Matt and it all made sense.

---------- Forwarded message ----------
From: Sarah Brenner
Date: Fri, Jun 26, 2009 at 4:25 PM
Subject: A New Son, and announcement of Brit Milah on July 1
To: Matthew Brenner

With great happiness and joy, we are delighted to announce the birth of our son.

Born: June 24, 2009

1:33 a.m.

9 pounds, 4 ounces

And a full head of hair!

We will be naming him according to tradition at a Brit Milah ceremony (ritual circumcision), eight days following his date of birth. As is customary, no formal invitation is issued -- all are welcome to attend.

The brit will take place on:

Wednesday, July 1, 2009

Ceremony begins at 5:45 p.m., followed by a Seudat Mitzvah (celebratory meal for all in attendance)

Congregation B'nai Israel

2111 Bryan Avenue

Tustin, CA 92782

The commandment for the Brit Milah was the first God gave to Abraham. There is a tradition that this mitzvah should be performed zealously, and so on the eighth day, many people look to perform the brit as early as possible in the morning as a sign of their devotion. While the Rabbis and scholars espousing this view were certainly well-intentioned, it is unlikely that they ever commuted on a freeway. Indeed, successfully attending a Brit at 8 a.m. by commuting on either the 5 or the 405 would not constitute a mitzvah, it would constitute a miracle. So make no mistake: we are excited and blessed to be here today, no matter the time, and thank all of you for joining us.

We are naming our son Hersh Shlomo, Hersh for my father, and Shlomo for Sarah’s paternal grandfather. In English, his name is Henry Sidney, also for my father and Sarah’s grandfather, with thoughts of two others as well.

The name Henry is for my father Harry Brenner. Harry spent his working life as an engineer, beginning at the Navy Department in Washington DC and later starting his own business in Los Angeles, focused on testing and confirming the safety of the critical parts that hold our buildings, airplanes, spacecraft, and even golf clubs together. He also valued Judaism and Jewish life, beginning as an international leader of B’nai Brith Youth and continuing on with constant yet unassuming involvement in his synagogue and B’nai Brith. Most importantly, he was fully devoted to his five grandchildren, babysitting, attending little league games, and generally doing everything he could to support and love them. While he didn’t make it to see our children, his devotion to them is unquestioned. He would get a real kick to know that his grandson is named for him. Long ago, the name Harry began as a nickname for Henry, and so while the names come from the same place, they are different. My dad would have certainly encouraged Henry to be his own man, and not be bound by any path that my father himself had taken.

In naming Henry, we also remember Henry Strongin Goldberg, the son of our friends Allen and Laurie and the toughest guy I ever met. Henry faced overwhelming odds from birth, due to a rare disease that subjected him to medical challenges and procedures beyond anything that any of us can comprehend. During his seven short but full years, Henry did not allow the disease to define him. Instead, he showed constant strength and courage in facing any surgery or treatment thrown his way, all in a fierce and determined battle for what we all take for granted – living a normal life. You only needed to meet him once to understand what it means to completely embrace life, from mixing it up with his brothers to idolizing Batman. His gravestone quotes Harry Potter – The Boy Who Lived – and it could not be more apt. In his short life, Henry taught that one must confront obstacles head on and appreciate all of life’s possibilities, particularly the routine that we take for granted. For our son, we wish some measure of the strength and positivity Henry possessed.

The name Sidney is for Sidney Musher, Sarah’s grandfather and husband to grandma Hadassah. He made great contributions to all of our daily lives and our most important interests. When you look in a supermarket aisle and find food that’s remaining fresh, you see the results stemming from one of the 200 patents Sidney obtained in food and pharmaceutical technology. When you read of Israel’s technological innovation and entrepreneurship, you see an Israel that Sidney envisioned when he initiated the Israel Research and Development Corporation, served on the Prime Minister’s Council for Economic Development, and was a philanthropist and dedicated supporter of Hebrew University and all technological development in Israel. And for the extended Musher family, you see it in the close relationships that all cousins have with each other, made possible by the annual vacations that Sidney and Hadassah sponsored that continue today, most recently in honor of Hadassah’s 97^th birthday.

Finally, in naming our son, we also remember Sidney Daye, the father of Henry’s Aunt Sandy who passed away a month ago. Sidney was a man of quiet strength and devotion, married to Selma for 63 years. Sidney, together with Selma, was a marvelous grandparent not just to his two granddaughters Morrisa and Yonina, but also to their cousins Ariel, Zachary, Jordan and Tali. Henry would certainly have been included in this group. Sidney’s low key demeanor meant that his resourcefulness and dedication might not be readily apparent, but I know first-hand of these traits, following the invaluable and timely assistance Sidney gave to me when my father was dying.

Henry, you begin life honored by the memory of generations, your great-grandfather, your grandfather, extended family and friends. You are surrounded by a loving family, including your sister Tali, Savta Esther, Grammy Ruth, Grandpa David, Great-Grandma Hadassah, and Great-Grampa Morris, over 100 years old and born while Teddy Roosevelt was President (we’ll talk a lot more about TR as you get older). Your broader family of uncles, aunts, and cousins, many who we’re lucky are here today and others who can’t wait to meet you soon, are thrilled that you have joined the family. And you are welcomed by friends near and far, including Tali’s good friend Karen who came over for a midnight sleepover with Tali last week that allowed Mommy and Daddy to make it to the hospital in time for you to be born. Barely in time – Mommy certainly would encourage you to complete projects with plenty of time to spare, as cutting it close to deadlines can be really painful! But whether you have tight deadlines, tough situations or any hardship that may come, you will know that you are surrounded by people who love you and a community that supports you, truly, l’dor v’dor, from generation to generation.

2009-07-02T20:41:00.000-04:00

Hey big man. Mom, Joe and I just got to the beach. We are staying with Aunt Abby and Uncle Andy for the Fourth of July. Jack is at camp - and it appears he is having a good time.

We just showed up and I gotta go eat dinner. I want to take this weekend to catch you up on everything. Let's see if I can do it.

Thinking about you. Loving you.

2009-05-21T09:54:00.001-04:00

Last night Jack, Mom and I were lucky enough to see an advance screening of a movie called "Up." It is a Disney Pixar movie and it comes out in theaters tomorrow. Of course when I see any movie before it comes out in theaters I think back to how you got to see Harry Potter and the Pokemon movie because of the nice people at the studios.

Up has a truly wonderful love story at its center. It also deals with loss. It made me think about the people who I love and who I've lossed. Which is another way of saying it made me think of you. Even though I was smiling and laughing for most of the movie, there were a bunch of times where a few tears started rolling down my cheeks.

And I wasn't the only one.

Without naming names, the other two people with me were affected the same way. Again, without naming names, the person who I was with who isn't Mom, was really moved. I think since he doesn't talk about you to anyone (like I talk to Mom or friends), sometimes his emotions will just burst through. It doesn't happen very often, but I think something like a movie can make that happen. That's why we have art - to help you think and help you feel. Sometimes it helps you "access" feelings you can't normally reach.

I'm glad we saw this movie. I'm sorry we saw it without you.

2009-05-20T13:43:00.000-04:00

Here is another picture of Stacy with Alicia.

I couldn't help wondering what Stacy's parents were doing after 7:30 pm last night. You take your child off life support and then what. Do you go to a movie? Mom had an idea that we would go drive around Minneapolis and visit some of your favorite spots while eating some of your favorite foods.

We ended going out for Chinese food. Everyone. Your grandparents, aunts, uncles and brothers. I think that may have been a mistake. There is one funny story from that meal that I will tell you one day. But not now.

I am sure that Stacy's parents are in shock right now and just going through the motions. Get up. Get dressed. Brush teeth. Cry. It is a very long road ahead.

I've said this to you before, but if you see that little guy - take care of him. You always looked out for younger kids. Part of what made you so special.

Love you so much and I am glad to be back writing to you. The conversation that I have with you in my head never ends. Even if it doesn't show up here.

2009-05-19T22:55:00.002-04:00

Hen, it has been so long since I've written. I wish I wasn't writing to tell you this, but the little fella on the right, his name is Stacy, well, he died tonight. He had Fanconi and his parents took him off life support at 7 pm. We know Alicia, his buddy on the left. She got a great Hope for Henry birthday party and gift.

I feel terribly sad for Stacy and his parents Michelle and Mark. They had to do the unthinkable tonight and help Stacy die.

Here is a journal entry from beautiful Sam McCarthy's mom, Nikki. We visited Sam and her family last month. There's a lot to tell you (we went to the White House and were on TV, Jack came in second in the state finals of the Geography Bee, Mom's book is cruising along, I am probably getting a new job). But for now,

Dear friends and family,

Since the beginning of this journey I have always tried to share all the good things that happen and the hardest parts. Today is one of the hard days. One of our FAmily members will be taken off of life support tonight at 7pm. His name is Stacy and he is five years old. He received his transplant not long after Sam. Unfortunately he contracted an infection in his port recently and it spread to his bloodstream. I remember meeting this little guy in the parent kitchen on the BMT floor. He was a teeny tiny little thing and I really only briefly spoke with his mom to ask wether he was an FA patient when I noticed that he had misshapen hands and thumbs. We have since passed in the elevator and maybe on the BMT floor at times. I never really talked to her much after that but I have spent the last few days crying, grieving and praying for her and her family. Her little dude was the same age as Joe and I am trying to keep from crying every time I look at him today knowing that this mom and dad are making a decision to let their son go tonight. Please pray for them tonight as they do something that is unthinkable for any parent to have to do. The truth of the matter is that he was in the same place as Sam is on any given day. BMT is a lifesaving but very scary process and today FA is taking a young life. I’m sad and scared but grateful at the same time. Grateful that Sam is improving a little bit with the antibiotics and feeling a little better this afternoon. I am hugging my kids and counting my blessings and praying for another mom and family today.

Nikki

2009-04-08T10:32:00.003-04:00

We went to St. Louis for Passover. It is our new tradition. We drove which was kinda tough, but your brothers were great. We saw your Hannah and Aunt Jen and Uncle Dan. We also saw Albert Pujols, who didn't come to the seder but did smack a couple of home runs.

That's a hot dog in a matzoh roll bun, by the way.

2009-03-08T22:47:00.002-04:00

Normally I don't have much good news to report. But it appears that these folks in California have come to their senses. It is so important to keep PGD safe and available for families who really need it.

Originally posted: March 5, 2009
Designer baby plan nixed for now by fertility clinic

The fertility clinic operator who grabbed headlines with his promise to help parents create “designer babies” has backed away from the plan—for the moment.

Dr. Jeff Steinberg, director of The Fertility Institutes, earlier this year had offered parents the opportunity to select their future offspring’s hair, eye and skin color by genetically testing embryos.

After an outcry, he changed his mind. “Though well intended, we remain sensitive to public perception and feel that any benefit the diagnostic studies may offer are far outweighed by the apparent negative societal impacts involved,” according to a statement posted on the clinic’s Web site this week.

Fertility experts were quick to note that science didn’t support Steinberg’s marketing pitch. Although embryos created through assisted reproduction can be tested for some genetic defects, the science of selecting cosmetic traits based on DNA data is not even close to being well established.

“Nobody can do this right now,” said Sean Tipton of the American Society for Reproductive Technology in the New York Daily News.

“The truth is that we cannot (yet) reliably test embryos for eye color, hair color, skin tones and other ‘cosmetic’ features,” warned a statement from the Center for Human Reproduction, a fertility clinic. “It will still take years before all of this will become technically even feasible.”

Distaste for the service that Steinberg promoted was widespread. Writing on her blog The Fertility Advocate, Pamela Madsen, founder of the American Fertility Association, said:
“Some things do need to have some sacred space around it. And the creation of life and the end of life is one of those things that deserves sacred space.”

Even the pope railed against the “obsessive search for the perfect child” last month, according to the New York Daily News. “A new mentality is creeping in that tends to justify a different consideration of life and personal dignity,” the paper quoted him as saying.

Genetic testing of embryos is nothing new: For some time, fertility doctors have been able to examine days-old embryos created in laboratories by removing a single cell and scanning it for known DNA abnormalities.

But so far, fertility experts have used the technique—known as pre-implantation genetic diagnosis—almost exclusively to screen for serious medical conditions caused by well-identified genetic mutations. Some clinics will also identify the embryo’s sex.

Steinberg’s clinic in Encino, Calif., is known for offering sex selection. His Web site also lists operations in New York and Mexico.

According to 2006 data published by the federal Centers for Disease Control and Prevention, the Fertility Institutes transfered far more embryos to women than are recommended under voluntary professional guidelines – a cause for concern. For instance, the clinic transferred an average six embryos to women under 35 years old; the standards call for no more than two embryos to be transferred to women of this age.

There’s reason to be lieve Steinberg will make another stab at marketing trait selection to would-be parents, despite the uproar. “Genetic health is the wave of the future,” he told the New York Daily News. “It’s already happening and it’s not going to go away. ... There’s nothing that’s going to stop it.”

2009-02-17T18:53:00.001-05:00

http://www.latimes.com/news/opinion/commentary/la-oe-mgoldberg17-2009feb17,0,4288749.story

From the Los Angeles Times

Opinion

Select a baby's health, not eye color

Clinics offering to create designer babies may turn people against a procedure that can save lives.

By Allen Goldberg

February 17, 2009

Something stinks about reproductive medicine in Southern California, and it doesn't involve eight dirty diapers.

Recently, the Los Angeles-based Fertility Institutes announced that it would soon be offering patients at its clinics the chance to choose traits such as "eye color, hair color and complexion." The clinics already offer gender selection to patients undergoing in vitro fertilization.

The Fertility Institutes employs a technique known as "preimplantation genetic diagnosis," which allows doctors to screen embryos soon after they are created in a petri dish and implant only the ones that meet certain criteria. The technique was invented to help high-risk families avoid or manage potentially deadly genetic traits, and to help women who've had multiple miscarriages conceive babies they can carry to term.

Now the Fertility Institutes is corrupting this lifesaving clinical procedure by using it to help families create designer babies, and I worry that their excesses will turn public sentiment against all preimplantation genetic diagnosis. That would be wrong.

My son, Henry, was born with a rare and fatal genetic disease, Fanconi anemia. Fanconi patients are born with faulty immune systems and a host of health problems. They are at high risk for leukemia and other deadly diseases and usually die before the age of 30. The only hope is a bone marrow transplant that replaces the immune systems they are born with. The transplants are most likely to succeed if the donor is a sibling who is a perfect genetic match.

My wife, Laurie, and I had always planned to have more children, and in the late 1990s we decided to try to employ preimplantation genetic diagnosis in an attempt to conceive a baby free of the deadly disease who would be a perfectly matched cord-blood donor for Henry. Cord blood is usually disposed of after birth, and harvesting it causes no problems or discomfort for a baby.

We were among the first families attempting the technique, but after three years of trying unsuccessfully, we ran out of time. Henry's health was deteriorating, and he needed an immediate transplant, which he got from an unrelated donor. Ultimately, his body rejected it. In December 2002, he died at the age of 7.

In the decade since we first tried to conceive using embryo screening, the technology has improved and has saved many lives. I get letters and e-mails with regularity from other Fanconi anemia families who were able to conceive babies who saved their siblings' lives.

But not all Fanconi families are lucky enough to live in the United States, where preimplantation genetic diagnosis is legal. The regulation and availability of the technique in the European Union is a patchwork, and some countries ban the practice outright.

I understand that there are ethical issues surrounding the procedure. Not all families are comfortable with creating embryos in the laboratory knowing that some of them will be discarded. And no one would advocate creating a child who is only wanted to save another's life. But the choice of whether to employ screening is a deeply personal one and should be considered with great care by families in consultation with their doctors and genetic counselors.

What I now fear, though, is that clinics offering trait selection to satisfy the whims of parents will turn people against a procedure that can save lives.

Henry was among the most optimistic, wise and courageous people I have ever met. We felt a great responsibility to do everything in our power to save his life. In the end, that wasn't possible. But our efforts contributed to scientific knowledge, and for that we are grateful. Abusing that hard-won knowledge to capriciously choose hair color, eye color and other cosmetic traits in a baby is wrong and repugnant.

Allen Goldberg is a marketing executive who lives in Washington. His blog about his son, Henry, can be found here!

2009-02-17T18:48:00.002-05:00

Benefit for Alise Williams

Posted: Feb 15, 2009 03:37 PM

CEDAR FALLS (KWWL) -- Alise Williams spent her fourth birthday in a Minnesota hospital Saturday. Williams is undergoing chemotherapy and a bone marrow transplant. Williams was born with 7 holes in her heart, and after her second open heart surgery, she was diagnosed with a genetic disorder called Fanconi Anemia.

The genetic disorder, seen approximately one in 600,000 people, causes an increased risk of cancer. William's parents and her 9 year old brother have been living in the Ronald McDonald house, near the University of Minnesota.
To help family through these treatments, friends gathered at the Cedar Falls AMVETS Sunday, holding a benefit for Alise Willimas+
"However, they still have their home here, still have bills. Deb had to quit her job for a year. Troy's taken a leave. Its been a hardship in that way also," said aunt Ladawn Hankins.

The benefit included several raffles and a silent auction. The donations were donated by friends, family, and people who didn't even know Alise.

Online Producer: Jackie Manternach

2009-02-12T12:02:00.029-05:00

Thank god for Dr. Hughes. Always the voice of reason. But where is the outrage from other doctors and everyone else. This doctor who is advocating using PGD for "cosmetic" purposes is dangerous. There are FA families who can't get PGD in the countries where they live, and this guy wants to cavalierly and capriciously cater to the vanity of parents who want to order traits for their kids a la carte.

Just because something can be done doesn't mean you should do it.

This is truly crazy and needs to be stopped before he endangers the techniques life-saving applications. Maybe I'll write a letter to the newspaper.

FEBRUARY 12, 2009

A Baby, Please. Blond, Freckles -- Hold the Colic

Laboratory Techniques That Screen for Diseases in Embryos Are Now Being Offered to Create Designer Children

By GAUTAM NAIK

Want a daughter with blond hair, green eyes and pale skin?

A Los Angeles clinic says it will soon help couples select both gender and physical traits in a baby when they undergo a form of fertility treatment. The clinic, Fertility Institutes, says it has received "half a dozen" requests for the service, which is based on a procedure called pre-implantation genetic diagnosis, or PGD.

While PGD has long been used for the medical purpose of averting life-threatening diseases in children, the science behind it has quietly progressed to the point that it could potentially be used to create designer babies. It isn't clear that Fertility Institutes can yet deliver on its claims of trait selection. But the growth of PGD, unfettered by any state or federal regulations in the U.S., has accelerated genetic knowledge swiftly enough that pre-selecting cosmetic traits in a baby is no longer the stuff of science fiction.

"It's technically feasible and it can be done," says Mark Hughes, a pioneer of the PGD process and director of Genesis Genetics Institute, a large fertility laboratory in Detroit. However, he adds that "no legitimate lab would get into it and, if they did, they'd be ostracized."

But Fertility Institutes disagrees. "This is cosmetic medicine," says Jeff Steinberg, director of the clinic that is advertising gender and physical trait selection on its Web site. "Others are frightened by the criticism but we have no problems with it."

PGD is a technique whereby a three-day-old embryo, consisting of about six cells, is tested in a lab to see if it carries a particular genetic disease. Embryos free of that disease are implanted in the mother's womb. Introduced in the 1990s, it has allowed thousands of parents to avoid passing on deadly disorders to their children.

But PGD is starting to be used to target less-serious disorders or certain characteristics -- such as a baby's gender -- that aren't medical conditions. The next controversial step is to select physical traits for cosmetic reasons.

"If we're going to produce children who are claimed to be superior because of their particular genes, we risk introducing new sources of discrimination" in society, says Marcy Darnovsky, associate executive director of the Center for Genetics and Society, a nonprofit public interest group in Oakland, Calif. If people use the method to select babies who are more likely to be tall, the thinking goes, then people could effectively be enacting their biases against short people.

In a recent U.S. survey of 999 people who sought genetic counseling, a majority said they supported prenatal genetic tests for the elimination of certain serious diseases. The survey found that 56% supported using them to counter blindness and 75% for mental retardation.

More provocatively, about 10% of respondents said they would want genetic testing for athletic ability, while another 10% voted for improved height. Nearly 13% backed the approach to select for superior intelligence, according to the survey conducted by researchers at the New York University School of Medicine.

There are significant hurdles to any form of genetic enhancement. Most human traits are controlled by multiple genetic factors, and knowledge about their complex workings, though accelerating, is incomplete. And traits such as athleticism and intelligence are affected not just by DNA, but by environmental factors that cannot be controlled in a lab.

While many countries have banned the use of PGD for gender selection, it is permitted in the U.S. In 2006, a survey by the Genetics and Public Policy Center at Johns Hopkins University found that 42% of 137 PGD clinics offered a gender-selection service.

The science of PGD has steadily expanded its scope, often in contentious ways. Embryo screening, for example, is sometimes used to create a genetically matched "savior sibling" -- a younger sister or brother whose healthy cells can be harvested to treat an older sibling with a serious illness.

It also is increasingly used to weed out embryos at risk of genetic diseases -- such as breast cancer -- that could be treated, or that might not strike a person later in life. In 2007, the Bridge Centre fertility clinic in London screened embryos so that a baby wouldn't suffer from a serious squint that afflicted the father.

Instead of avoiding some conditions, the technique also may have been used to select an embryo likely to have the same disease or disability, such as deafness, that affects the parents. The Johns Hopkins survey found that 3% of PGD clinics had provided this service, sometimes described as "negative enhancement." Groups who support this approach argue, for example, that a deaf child born to a deaf couple is better suited to participating in the parents' shared culture. So far, however, no single clinic has been publicly identified as offering this service.

Like several genetic diseases, cosmetic traits are correlated with a large number of DNA variations or markers -- known as single nucleotide polymorphisms, or SNPs -- that work in combination. A new device called the microarray, a small chip coated with DNA sequences, can simultaneously analyze many more spots on the chromosomes.

In October 2007, scientists from deCode Genetics of Iceland published a paper in Nature Genetics pinpointing various SNPs that influence skin, eye and hair color, based on samples taken from people in Iceland and the Netherlands. Along with related genes discovered earlier, "the variants described in this report enable prediction of pigmentation traits based upon an individual's DNA," the company said. Such data, the researchers said, could be useful for teasing out the biology of skin and eye disease and for forensic DNA analysis.

Kari Stefansson, chief executive of deCode, points out that such a test will only provide a certain level of probability that a child will have blond hair or green eyes, not an absolute guarantee. He says: "I vehemently oppose the use of these discoveries for tailor-making children." In the long run, he adds, such a practice would "decrease human diversity, and that's dangerous."

In theory, these data could be used to analyze the DNA of an embryo and determine whether it was more likely to give rise to a baby of a particular hair, skin or eye tint. (The test won't work on other ethnicities such as Asians or Africans because key pigmentation markers for those groups haven't yet been identified.)

For trait selection, a big hurdle is getting enough useful DNA material from the embryo. In a typical PGD procedure, a single cell is removed from a six-cell embryo and tested for the relevant genes or SNPs. It's relatively easy to check and eliminate diseases such as cystic fibrosis that are linked to a single malfunctioning gene. But to read the larger number of SNP markers associated with complex ailments such as diabetes, or traits like hair color, there often isn't enough high-quality genetic material.

William Kearns, a medical geneticist and director of the Shady Grove Center for Preimplantation Genetics in Rockville, Md., says he has made headway in cracking the problem. In a presentation made at a November meeting of the American Society of Human Genetics in Philadelphia, he described how he had managed to amplify the DNA available from a single embryonic cell to identify complex diseases and also certain physical traits.

Of 42 embryos tested, Dr. Kearns said he had enough data to identify SNPs that relate to northern European skin, hair and eye pigmentation in 80% of the samples. (A patent for Dr. Kearn's technique is pending; the test data are unpublished and have yet to be reviewed by other scientists.)

Dr. Kearns' talk attracted the attention of Dr. Steinberg, the head of Fertility Institutes, which already offers PGD for gender selection. The clinic had hoped to collaborate with Dr. Kearns to offer trait selection as well. In December, the clinic's Web site announced that couples who signed up for embryo screening would soon be able to make "a pre-selected choice of gender, eye color, hair color and complexion, along with screening for potentially lethal diseases."

Dr. Kearns says he is firmly against the idea of using PGD to select nonmedical traits. He plans to offer his PGD amplification technique to fertility clinics for medical purposes such as screening for complex disorders, but won't let it be used for physical trait selection. "I'm not going to do designer babies," says Dr. Kearns. "I won't sell my soul for a dollar." A spokeswoman for Dr. Steinberg said: "The relationship between them is very amicable, and this center looks forward to working with Dr. Kearns."

For trait selection, Dr. Steinberg is now betting on a new approach for screening embryos. It involves taking cells from an embryo at day five of its development, compared with typical PGD, which uses cells from day three. The method potentially allows more cells to be obtained, leading to a more reliable diagnosis of the embryo.

Trait selection in babies "is a service," says Dr. Steinberg. "We intend to offer it soon."

Write to Gautam Naik at gautam.naik@wsj.com

2009-02-11T13:57:00.007-05:00

Mom said that it is getting time to help her put together the photos for her book. Wow. I am incredibly excited but at the same time intimidated by that. There are so many great photos, I'd want to include them all. It is going to be hard to choose.

Here is a photo of you from the Central Park petting zoo. I "borrowed" it from Nana when she pulled out a big box of her pictures when we were in St. Michaels in December on the anniversary of your death. I wish there was a "hi-def" scanner. All of the colors seem to get muted when I scan the photos.

The good thing is that anyone who wants to see more pictures of you can come here. There will probably be a website for the book with links here and to the earlier blog. Maybe I can put together a mega-slideshow of the best of your pictures for that.

2009-02-11T11:24:00.002-05:00

You remember how your friend Sara Albert was on the show America's Next Top Model, well here is another Fanconi connection for the show. I said that Madeline Finnegan was the prettiest Fanconi patient ever. Now she'll be even more beautiful.

'ANTM' Judge Makes Dreams Come True

Tuesday, February 10, 2009

Though it may seem as if he's capable of crushing a model's aspirations on TV, Nigel Barker is actually out to fulfill wishes – for one lucky 13-year-old girl, that is. The America's Next Top Model judge has worked with the Make-A-Wish Foundation to help out teenager Madeline Finnegan, who has held on to dreams of becoming a famous fashion model for some time.

Finnegan, who hails from the town of Huntsville, Alabama, was flown to New York recently to get the full top model treatment, from the hair to the make-up and of course, the wardrobe. Afterwards, she accomplished her goal of being photographed by one of the industry's best – Nigel Barker. She came home with a portfolio compiled by the America's Next Top Model personality, which she truly delighted in.

Dear Henry

Opinion

Select a baby's health, not eye color

Laboratory Techniques That Screen for Diseases in Embryos Are Now Being Offered to Create Designer Children

By GAUTAM NAIK

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