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

I wish they could have included a picture of you with this, but it is in part of the newspaper that is very serious. It is very serious but they still have cartoons. Kinda crazy, huh.

There is a picture of you in the paper today, though. There is a magazine called Parade that comes with the newspaper. In it there is a photo of Jack holding a photo of you. There is a picture of Mom and me, too, and I look like I am sucking on a lemon. Mom said they chose that picture because they wanted one that makes us look sad.

I am really proud of Mom.



Vetoing Henry

By Laurie Strongin
Sunday, July 23, 2006; B02

It was meant to be uplifting: President Bush, surrounded by children who had been "adopted" as embryos, vetoing a bill to permit federally funded human embryonic stem cell research. The children were meant to be props, reminders of the lives his veto would supposedly save. But all I could think about were the children who will be lost because of the politics being played by the White House and on Capitol Hill.

I know, because that's what happened to my son.

On Oct. 25, 1995, I gave birth to my first child, a boy my husband and I named Henry. Two weeks later, doctors determined that he had a rare genetic disease called Fanconi anemia (FA). When Henry was born, there were approximately 1,000 people with FA worldwide, and I didn't know a single one of them. I'd never even heard of the disease. But my husband and I were unknowing carriers of the gene that causes it. And so we passed FA on to Henry along with brown hair, brown eyes and dimples.

Over the next seven years, I learned almost everything about FA, and none of it was good -- especially the impossible-to-accept word associated with it: fatal. Our only hope lay on the frontiers of science, in human embryo and stem cell research. That's where our desperate quest for a cure took us, even as distant policymakers placed emotionally devastating stumbling blocks in our path, obstacles that I believe may well have cost Henry his life.

In almost all cases, FA leads to aplastic anemia, in which the bone marrow does not produce enough red cells, white cells or platelets. This inhibits the body's ability to fight infection, causes spontaneous bleeding and exhaustion and leads to death. The most successful treatment is a stem cell transplant, commonly known as a bone marrow transplant.

In 1995, Fanconi transplant survival rates were dismal. No one with Henry's type of FA had ever survived a transplant unless the donor was a sibling. For Henry to live long enough to reach kindergarten, we would have to have a baby who did not inherit FA and was a perfect stem cell donor for him. With each pregnancy we would have an 18 percent chance of hitting those odds. It was a long shot.

From the moment of Henry's diagnosis, my husband and I believed that if we made every call, pulled every string and pushed love and science to their outer limits, Henry would escape his fate. We searched for someone in the medical world who, like us, was unwilling to accept Henry's death sentence without a fight.

Our search led us to Mark Hughes, then chief of reproductive and prenatal genetics at the National Institutes of Health. He had figured out a way to combine in vitro fertilization with genetic testing before an embryo is implanted. This procedure, preimplantation genetic diagnosis (PGD), involves extracting and testing a single cell from an eight-cell embryo. The results could allow us to know at the moment of conception that our next baby would avoid FA and be an ideal stem cell donor for Henry.

By collecting this healthy baby's umbilical cord blood -- which is typically discarded -- at birth and transplanting the stem cells into Henry, we could save him. Hughes had used PGD to screen embryos for fatal childhood diseases such as cystic fibrosis. But neither he nor anyone else had ever used PGD to save the life of a child already born.

When we began quietly pursuing PGD a decade ago, it was not on the national news or featured in fertility clinic advertisements. It was somewhere between a hope and a dream shared by a small group of doctors and families. But on Jan. 9, 1997, an article in The Washington Post reported that Hughes was violating a two-year-old federal ban on human embryo research with his work on PGD.

Under the ban, Hughes was barred from performing that work as part of his position at NIH. Refusing to abandon his research or the families who were depending on it, he set up a lab as part of an in vitro fertility program at a private hospital across the street in Bethesda. But he was considered in violation of the federal law because his work at the hospital employed NIH research fellows and used NIH equipment -- a refrigerator.

Over the following weeks, the daily headlines all read the same to me: Henry is going to die. As our doctor was forced to resign from his job and faced congressional hearings, Henry's blood counts declined. We searched for alternatives to PGD, but none existed. The politically triggered delay had stolen precious time in our race to save Henry's life. On Dec. 11, 2002, he died in my arms.

There were nearly 100 embryos left over from our PGD attempts. Many had Fanconi anemia. All were precious. After we unsuccessfully attempted to use a number of them to have another baby, it became clear to us that they are not potential life, but lifesavers. So we signed consent forms donating our remaining embryos to be used in research that would provide hope and answers for other couples.

Hospitals are filled with children whose lives depend on medical advances that hold the promise of stalling or even reversing fatal disease. During last week's ceremony in the White House East Room, Bush justified his veto by saying that the bill "would support the taking of innocent human life." But the East Room isn't big enough for all the additional innocent lives that will be lost as a result of his decision.

lstrongin@starpower.net

Laurie Strongin is the founder of the Hope for Henry Foundation.


© 2006 The Washington Post Company

I am not exactly sure why Duncan's dad says things about "an ugly, awful death."I guess he is trying to get people to support his bill. Sometimes you have to say extreme things to get people to act. I hope it works. More importantly, I hope Dr. Hughes is able to help them.

I tried hard to get our insurance company to pay for all of this but was unsuccessful. I had doctors write letters and put together briefing books. Nothing would convince them. If "Duncan's Bill" becomes law that would be a great thing for everyone.



Treatment Eyed for Youngster's Rare Disease

Jim Baron 03/29/2004

CUMBERLAND -- Looking at 8-year-old Duncan Nunes, you wouldn't think about someone at the cutting edge of genetic science.

The Community School second-grader, in the words of his father, Fred, "looks like a normal kid" who enjoys doing normal-kid things.

But inside Duncan's tiny body, the DNA in his cells is breaking down.

That process is by no means uncommon, but unlike the vast majority of people, Duncan's body can't repair itself. He was born with something called Fanconi anemia, an inherited condition that leads to bone marrow failure.

It means, among other things, that he is at great risk for contracting leukemia.

His body is not producing the red and white blood cells he needs, so that even roughhousing with his brother can leave him with bruises his sibling didn’t get.

The usual solution, Fred Nunes says, is a bone-marrow transplant, but that comes with its own set of problems. Because of his cell deterioration, Duncan can't withstand the rigors of such a transplant, which would involve chemotherapy and radiation treatments to effectively kill his immune system so the donor's marrow could regrow inside of him without rejection.

Neither of Duncan's siblings have marrow that is a match for his.

Trying a transplant with bone marrow that matches Duncan's, but is not from a direct relative, "has a high failure rate," Fred Nunes says. Seventy to 80 percent of patients receiving such treatment will die what he calls "an ugly, awful death, and pretty quickly." And those who survive are so prone to cancers and tumors that their quality of life -- for only the six-10 more years that most usually live -- is heartbreakingly difficult.

That is where the cutting edge of genetic science comes in.

Duncan and his parents are pursuing an option called IVF/PGD (in vitro fertilization/pre-implant genetic diagnosis).

The process starts like conventional in vitro fertilization, such as a couple with fertility problems would undergo. But then a test is done to see which fertilized egg would produce a baby that would be a match for Duncan. That egg would be implanted in Duncan's mother, Nancy, to carry to term.

Once the baby is born, material from the umbilical cord can be frozen and transplanted into Duncan.

The process is not cloning, Fred is quick to point out. The new baby would be a regular child in all aspects. "We will wait and see what God brings," he said.

After Nancy Nunes went through her pregnancy, there would not only be a new baby in the family, but perhaps a cure for Duncan -- what his father calls "a decent chance at a decent life."

One of the top doctors in this field, Dr. Mark Hughes of Wayne State University in Detroit, has already worked up the tests to determine which egg would produce a matched sibling for Duncan. While some facilities charge as much as $100,000 for this type of work, Hughes, who works with many Fanconi patients, is willing to do it for $2,500, Fred said.

Initially, Blue Cross/Blue Shield of Rhode Island balked at paying for the procedure.

"Blue Cross is a caring organization and has the best intentions at heart," Fred Nunes says. "But like any other large organization or institution, they have their own bureaucracy, and cutting through that bureaucracy can be difficult sometimes."

But after being turned down twice, he related, "we finally got through to the right people and, much to Blue Cross' credit, they made the right decision to cover a part of this."

While it will cover the in vitro fertilization procedure, the company doesn't want to pay for the pre-implant genetic diagnosis. Nunes said the family will pay for that procedure. "Blue Cross is not a villain in this," he emphasizes.

Fanconi anemia is rare, he said, affecting only about 150 people in the entire country, three of whom live in Rhode Island. Only a portion of those 150 would be able to take advantage of the treatment.

The only patients who can opt for this regimen are those with parents of child-bearing age.

Fred and Nancy Nunes contacted their state representative, Donald O. Reilly, asking him to submit legislation to mandate that health insurers in Rhode Island provide coverage for Fanconi anemia, "so no one else has to go through what we are going to," Fred says.

"It is an economic decision being made by insurance companies not to cover this," Reilly said.

"These are good, solid, American people," Reilly said. "They pay their insurance premiums. To have this denied to them is incomprehensible."

The bill was transferred this week to the House Finance Committee, away from the Corporations Committee, which usually handles health insurance bills. Reilly says he hopes the bill will get a hearing at which the Nunes’ can testify. Fred Nunes says he wants to testify "to put a face on the issue" for legislators before they vote.

©The Pawtucket Times 2004

The hurricane is here. Jack didn't have school today and Mom stayed home. I worked all day and watched the trees dance around outside in the wind. The sky wasn't too dark and the rain didn't seem to be coming down very hard. But finally I realized that almost no-one else was left so I figured it was time to go home. When I walked outside with a friend I was surprised that the rain was really soft. It felt and tasted and smelled like rain at the beach. I could not help but think of how great it would be to sit in bed and listen to the rain on the windows.

When I was driving home through the rain and wind I remembered the last hurricane we had around here. It was named Floyd. I don't think anyone is named Floyd anymore.

Floyd hit the East Coast in 1999, right when we were trying to have a baby to be your brother or sister and your transplant donor.

We wanted so badly to be your heroes. I wanted to be Batman and Superman all rolled up in one. My super power would be saving lives. Mom did the real hard stuff and I got to drive. My super power ended up to be driving. I was "DriverMan." Ta da!

Here is something Mom wrote about Hurricane Floyd.

Hurricane Floyd wreaked havoc throughout the East Coast of the United States in September 1999. From the Carolinas to Boston, homes were destroyed; streets were flooded; electrical outages were rampant; lives were altered; dreams were destroyed. Among the trains and flights cancelled were those Allen and I relied upon to deliver our cells to Mark Hughes in Detroit.

As storm warnings increased and travel cancellations loomed, I urged Allen to take an early train to New York. I packed a bag for him and hurriedly took him to the train bound for New York. Many others had similar ideas and after missing an overbooked train, Allen got on the last train to New York, arriving at 2:00 a.m.

After a few hours of sleep, Allen awoke and headed for the lab at Cornell to pick up the cells and head for LaGuardia. Drenched by pelting rain, Allen arrived at the hospital to learn that LaGuardia was closed for the remainder of the day. Allen called me and I put a crisis plan in action. I booked two different flights out of Newark airport and decided to rent a car, just in case. By the time the cells were ready, Allen dashed out of the hospital, box in hand, and hailed a cab for the airport. At that point, numerous exit points from the city were closed due to hurricane-induced flooding. Allen had to convince the cab driver that it was his obligation to get Allen to the airport despite his refusal to do so. By the time Allen got to Newark, both flights I had booked were cancelled and the airport closed. Rumors were flying about the lack of availability of rental cars, but Allen had his reservation number, headed to the rental car area and within hours was in the car with only a backpack and the cells from 19 preembryos in a styrofoam box and a map denoting the path from Newark, New Jersey to Detroit, Michigan.

On only four hours of sleep, Allen drove the more than 600-mile route through the eye of the storm. He stopped ½ hour outside of Detroit to call the researchers to advise them of his arrival and handed off the package at nearly 2 a.m., more than 10 hours after the original flight would have gotten him there, but an entire day before any flight could have delivered him and the cells. This heroic trip saved the cells from expiring and allowed us to have yet another chance to save Henry’s life.

Allen spent the night in Cleveland on his way back to New York and after a few hours of sleep, drove the remaining 8 hours to Newark where a shocked car rental attendant noted the 1200 miles driven in less than 26 hours. Leaving the kids safe with my mom, I got into my car and headed to Newark where I would pick up Allen and head to New York to await our test results… for the sixth time.

Of course what I did was nothing like the adventure that Amitai's daddy had trying to get their cells to Detroit. There was a blizzard. Planes were not going all the way to Detroit. Some very kind man sat next to Amitai's daddy on their flight from New York to Cleveland, which was as far as the planes could go. He volunteered to drive Amitai's dad and the cells through the snowstorm all the way to Detroit. He did it just because he was nice. He was a hero.

I wish I was sitting in bed with you right now listening to the rain. Joe is in bed with us. He is eating a cookie and getting crumbs on my side. It's okay because it make me think of you. You ALWAYS ate crackers on my side of the bed. Not Mom's side, just mine. I complained then, but I it's fine now.

Dear Henry:

Mom and I went to the cemetery yesterday. It was snowing when we got there. As we pulled up there was a man locking the gate. Mom, and I love her for it, asked the man if he would open back up to let us in. He said he didn't need to. All we had to do was park outside the gate and walk around the wall. Basically, we can come visit any time of day or night.

Here is a picture of where you are buried and the tree next to you. You have shade from the sun and there are nice benches to sit on for people who come out. There were some flower stalks sticking out of the ground by your grave, so someone else has been out there. Mom thinks it might have been Debbie Blum. A marker at the grave says your name. We'll get you something fancier soon. I wonder what it will say. I want people to know right away that you are a kid.





There is a sculpture of Moses nearby. I don't know if I've mentioned this to you before, but I think you have a lot in common with Moses. You brought Amitai and others who will survive transplant (because of the work you and Mom and Mark Hughes did with PGD) to the promised land but you were unable to enter.



Hannah and Aunt Jen and Uncle Dan are in Washington this weekend because we are "unveiling" the fancy plaque on Grandma's grave. She had a marker like yours with her name. Then Pop Pop Teddy got something nicer, and there will be a ceremony tomorrow for everyone to see it. Here is a view from Grandma's grave to your grave. You are very close. It's nice for us; I hope it is nice for the two of you. I am so glad that you are together. Papa Sy's parent's, Nan and Pop are buried not too far away. Mom said you'd love them. There is a lot of family around. Just like when you were alive.







Visiting wasn't as sad as we thought it would be. It doesn't necessarily feel like you are there. I said to Mom that it is more a place where we can go and think about you. I get more sad and feel you more when I go to a place where I know you used to be, where you used to smile and laugh, like our house or school or even someplace like White Flint Mall. Do you remember when we went there to get you the tuxedo for Tim and Catherine's wedding? That was so much fun even though Jack didn't want one and was in a real bad mood. Then he was bummed out after seeing you all dressed up and he realized he didn't have one. He gets stubborn sometimes. Another fun memory of White Flint is KidZone. It used to be called DiscoveryZone. I dropped Zhenny and Joe off there the other day so they could get out of the house. They had so much fun that we decided to take him back today, Saturday, along with Hannah and Jack.

"Attention, attention I've got something to mention." That is what the guy is saying over the loudspeaker at KidZone. Mom went with Joe to Bloomingdales. They are going to buy Mom a winter coat for work and maybe a birthday present for Zhenny. The last time we were here must have been long ago. This place should be called GermZone. Even though you are gone I still cringe when I hear a kid cough or sneeze.







A few hours before we went to the cemetery I was driving home from the printers where Jeffrey, David and I are having the letterhead and business cards printed for The Jewish Rock & Roll Hall of Fame. The printer was in Takoma Park and I was thinking about a bunch of different stuff on the ride home. One thing that crossed my mind was that we should get a dog. Jack and now Joe are big enough to enjoy a dog. I wish we could have gotten one when you were alive. As I was driving along Nebraska Avenue thinking about what kind of dog we might get, a woman ran off the sidewalk out into traffic and smashed into the minivan. To be honest I thought I had killed her. It was very upsetting. I didn't see her until it was too late. I saw her out of the side of my eye, there was a loud bang and she disappeared down onto the street. I slammed on the brakes and came around to see what I could do to help her. There were a lot of people who had run to help. She told me that her husband was a couple of blocks away and I ran as fast as I could to go find him. I remembered back to the day in August when I thought you were dying and I drove so fast to the hospital just to have a chance to say goodbye. I didn't want this woman to be in pain without her husband to comfort her, and I wanted her husband to have a chance to say goodbye if she was hurt really bad.

An ambulance came and they took a long look at her and nothing appeared to be broken or too serious. I was so relieved for her. She had a gash on her forehead, and her wrist looked banged up. Her husband, who I didn't find when I went to look for him but finally showed up, hugged her so tight when he saw her. The woman didn't want to go to the hospital in the ambulance.They were from Williamsburg, Virginia and wanted to wait until they got back home to go see a doctor. I told her that she needed to go before she headed home. How could she know if she was bleeding inside or had a concussion. I finally convinced them to go and they followed me to Georgetown Hospital. I left them at the Emergency Room. I asked if Dr. Foley was on duty and they said no. She was attending when Mom and the police rushed you to Georgetown on August 24th. She is the mommy of Helen, your friend from camp.

The woman who I hit called me yesterday to let me know she was alright. She told me that if she was going to get hit by a car she was glad that it was me. That was nice. I still see in my head the image of her smacking into the car. It was very scary. She crushed the side view mirror into little pieces. If things had happened a half a second sooner she would have been in front of the car instead of the side and she probably would have died. The strangest thing is that a policeman gave her a ticket for not crossing in the crosswalk.

I asked her why she bolted into the street without looking and whe told me she was running after a friend's dog, who got loose. Your brothers are going to have to wait awhile for that puppy.

I wish I had some good news to tell you, but the space shuttle crashed today. All of the astronauts died. Do you remember when we went to Kennedy Space Flight Center at Cape Canaveral. We went up in the space shuttle model. I remember that you got a nifty marble that had the earth on it. We also bought t-shirts that you and Jack wore a lot, and Jack got a great astronaut flight suit. Do you remember meeting astronaut, Cmdr. Jon McBride. He was pilot of Space Shuttle Challenger mission STS-41G which launched on Oct. 5, 1984 with the first crew of seven astronauts. The strange thing is that his wife, Sharon, is from Nacogdoches, Texas. That is the very place where the space shuttle disintegrated today when it reentered the earth's orbit. It is a very sad day for everyone, especially the moms and dads and husbands and wifes and kids of the astronauts who died. You might remember that in one of our science lessons where I would read to you from things I found in the newspaper how I told you how there is an astronaut from Israel. He died today.



Do you remember how you fell off a piece of the playground equipment at Cape Canaveral. You were upset and so were me and Mom. Your chin got the worst of it. You can see it in the photo. But from your smile it looks like you were okay. The cool thing is that Jack said this morning that even though the shuttle crashed he still wants to be an astronaut.

Dear Henry:

Sorry I haven't written but I have been helping Mom with something she was writing on the computer. She wrote a presentation to make to a bunch of really important people today. She talked about what we did to try to have another baby that had healthy blood to give to you. We want to make sure other families get a chance to do what we did and hopefully it will work for them. A lot of President Bush's guys were there and Dr. Rosenwaks, Dr. Auerbach and Mark Hughes were all there too. They miss you so much. I don't know if you remember Mark. We went to lunch one day with him at Mom's old college, "M Go Blue." His wife died when he was working with us and he went to his laboratory right after her funeral to help us. He is such a good person, and he told me today that he is so sorry that he couldn't save your life. He tried so hard and so did me and Mom. I am so sorry too. It was a little weird and nice and hard to see our friend Sharon who was here for the same meeting. Do you remember the meetings you used to go to with me at the coffee place by the Gan and David Segal's apartment. You were very helpful, you know that. Well, Sharon came here from Tel Aviv for this meeting with Mom and all of the doctors. You probably remember when we saw Sharon in New York with her husband Yavin and their little boy Amitai. He had the same problem with his blood that you had. Sharon -- you say "Shah-rown" the way you say the Hebrew words you learned in school -- had a baby with the help of Mark and Dr. Rosenwaks and her name is Alma. Doctors in Israel gave Amitai some of Alma's blood the same way you got your new blood in Minnesota from Beverly. It looks like Amitai is going to be okay and not have any of the problems you had. When Sharon spoke today to the doctors, she said that Henry Strongin Goldberg saved Amitai's life. You did. That is the best thing that any person can do. Saving someone's life and loving people are the greatest things we can ever do and you did both. I am proud of you.

We will go visit Sharon and her family in Israel some time. I am sorry that you never saw Jerusalem. It is so beautiful. Yavin and Sharon planted a small grove of trees on a hill overlooking Jerusalem in your honor.

I want to show you an email that Mom and I got from one of the teachers who helped in Aunt Tracey's class.

Dear Laurie and Allen.

Dec.31, 2002

My name is Elizabeth Aloni, teacher at Gan Ha Yeled at Adas Israel (the
Chicks class). Last year, in a shabbat class celebration Henry came
over as a special guest for Sam Strongin's. That was a very special day for all
of us, the little ones were observing all Henry's motions and inputs.
Anyway G-d bless his memory. What I want to tell you is that on that day, when
we passed the Tzedakah box to collect pennies for charity, Henry said
"this is very important, we should give this money to the poor children in
Africa or Afganistan...."

That was very sweet of you. You always thought of others (starting with me, Mom, Jack and Joe) and that was really nice and really grown up of you.

It has been snowing a lot around here lately. You know the sun hasn't really shone since you died. There is a great song that says, "Ain't No Sunshine When She's Gone." I feel that way about you. I am not sure if the sun hasn't come out or I just feel that way. I feel like it makes sense the sun isn't shining, but I will be okay when it does finally come out.

I am going to try and go to sleep now. Mom has one more day at the meeting tomorrow. I missed her a lot when she was there today and I was home. When I am away from her I get more sad about you, but that isn't a terrible thing really. I see you in Joe a lot of the time. That helps. I don't confuse you guys though. There was a Rabbi at the meeting today and he told a story about how he remembered a thing so clearly that happened when he was 6 or 7 years old. He looked like he was in his 70s so that made me feel good. It made me think that my memories of you will be clear in my mind too when I am in my 60s, 70s and 80s.

I love you big guy.

Dad

p.s. Jack, otherwise known as Sir Burpsalot, is sleeping in our bed tonight and he cannot stop yakking even though everyone is trying to fall asleep. You were always like that too. Oh my god. Whenever I wanted to go to sleep you would just talk, talk, talk. The later it was the more you had to say. It was that way in the car, at the hospital everywhere. You know, thanks for doing that. I didn't know it then but it let us spend more time together. As for right now, I don't want to go to sleep, I don't want to say goodnight to you. I love you so, so much.