Monday, May 17, 2004

I stopped in to see Mrs. Singer this morning when I dropped off Jack at school. She had called home and left a message that she wanted to talk to me and Mom. She wanted to talk about some classwork that Jack did last week.

Jack's class read a book, When I Was Young on the Mountain, and then they were supposed to write down a happy memory. Jack asked Mrs. Singer if he could write a sad memory instead.

Mrs. Singer wrote on the paper that she feels the same way, too.

Friday, May 14, 2004

I love finding pictures of us. I think in this photo you and I were watching softball at Stoddert.

Thursday, May 13, 2004

I have so much to tell you, but I don't have much time. Let me just say that your brother Joe was initiated into the fraternity of Goldberg boys on Friday. He was jumping on the couch, fell and hurt his head. He went to Georgetown and got one stitch in the noggin. Remember when that kid Jonah put a screwdriver into Jack's head, then there was your brain surgery and let's not forget that I fell off a cannon when I was a kid and got a bunch of stitches on the top of my head, too.

He was brave like you.

Wednesday, May 12, 2004

Here are more pictures from the beach. Mom asked me if I think I'll ever be able to go to the beach without being sad. I said that I know one day I'll be able to go and only smile when I think of all the great times we had there - just not now. I have been going to Rehobeth since I was your and Jack's age. It will always be a special place for me.

Jack got bit on his hand by this turtle. Luckily, the little guy didn't break the skin. It was pretty upsetting for your brother. A man who was nearby said that even the Crocodile Hunter get nipped from time to time.

Here is Abby and Andy's house. It is getting fixed up a bit. Everyone is supposed to go down for the Fourth of July. Hopefully the house will be done. I am sure it will be nice.

Check this out. When we were riding the big bike we passed this trailer. Isn't it cool how Aunt Alice and Uncle Peter's house is on it. I miss it and the times we all spent there.

Joe is now old enough to enjoy Funland. He didn't really go on any rides but he did sit in the firetrucks and rang the bell.

Joe found elephant heaven in a bookstore on Rehobeth Avenue. He loves to line them up. I think he'd love the circus.

The Coast Guard has a training exercise in the middle of Rehobeth Beach. I was very worried until I realized it was just a drill. They should have put up a sign so all the people watching wouldn't have worried.

Monday, May 10, 2004

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

You were on TV this morning.

It is nice to see you. I am getting this machine that will let me transfer all of our videotapes and home movies onto DVD. It will be nice to put together a movie of you. A greatest hits movie.

Technology customizes kids by sex
Choice: A technique to identify healthy embryos for implantation can also be used to select gender.

By Julie Bell
Sun Staff

May 10, 2004

Darra and David Williams were running out of hope for having a baby without cystic fibrosis when they heard about technology capable of helping them select healthy embryos - as well as their child's gender.

At an Irvine, Calif., clinic, now-familiar technology was used to fertilize her eggs with his sperm. But in a Brave New World twist, doctors at Coastal Fertility Medical Center then pulled a cell from each resulting embryo to test it for defects such as the cystic fibrosis that runs in David's family, as well as for its sex. Four were healthy - three boys and a girl.

"We had one goal in mind, and that was to have a healthy baby," Darra said, and the couple decided to put all four healthy embryos in her womb. Twin boys resulted.

The Williams' clinic doesn't allow parents to use the process - pre-implantation genetic diagnosis, or PGD - solely for sex selection. But a small but increasing number of clinics and parents are making a different decision, employing technology once used exclusively to avoid disease to select the sex of their babies. In the process, they're rejecting embryos considered undesirable because of their sex.

It is only a matter of time, experts say, before PGD can be used to select embryos for other characteristics parents desire in their children, such as eye color or athletic prowess. Already, some have used PGD to choose embryos that are immune-system compatible with a sick son or daughter, thereby custom creating a child to provide a transplant for a sibling already born.

Last week, Chicago researchers published a study in the Journal of the American Medical Association showing that PGD had been used by five couples to make a baby that was a match for an older sibling in need of a stem-cell transplant.

For many, it's morally permissible to select for a child that will save the life of another, or to avoid the birth of a baby destined to suffer a slow, agonizing death from a childhood disease such as the nervous-system destroyer Tay-Sachs. Reproductive rights are the purview of doctors and patients, they say, and a matter of choice.

Besides, they point out, PGD enables parents to select embryos before they're put in the womb, avoiding what many consider a more wrenching decision - whether to have an abortion if prenatal tests show a fetus has a genetic disorder.

But for others, the trend puts America on a perilous path, one in which custom-kid technology available only to those who can afford its $12,000 to $15,000 price could change the way society values the disabled or warp our view of the worth and purpose of a child.

"We are already sliding down a slope," said Amy Laura Hall, an assistant professor of theological ethics at Duke University. "With selective reproductive technologies, parents and society are involved in a kind of negative eugenics."

Adding to critics' concerns is the fact that this latest evolution of test-tube baby technology is happening in the largely unregulated U.S. fertility industry. It's also becoming increasingly popular, even though there have been few studies looking at whether removing one cell of an embryo might damage the remaining cells and, ultimately, the child.

Nationwide, 40,687 infants were born in 2001 using all kinds of assisted reproductive technology, according to the most recent federal data. In contrast, about 1,000 babies have been born worldwide using PGD since the first clinics began using it in humans, the Washington-based Genetics & Public Policy Center estimates.

There's no question the pace of those births is quickening.

In Great Britain, the government regulates when PGD can be used. Without such regulation in the United States, some doctors look to the American Society for Reproductive Medicine for guidance. But the society hasn't taken a position on screening embryos for tissue type. It supports screening to prevent disease or to "balance" the sex makeup of a family after the birth of a first child.

The bottom line: In the United States, doctors and patients decide when to use PGD.

Fertility centers associated with the University of Maryland, the Johns Hopkins University and the Greater Baltimore Medical Center don't allow the process to be used solely for sex selection. Nor does a PGD lab affiliated with Shady Grove Fertility Center in Rockville.

"The last time I checked, sex was not a disease," said Dr. William G. Kearns, Shady Grove's PGD director, explaining why gender selection isn't allowed unless it's associated with the propensity for a disease.

But in Houston, Dr. Joe Leigh Simpson of Baylor College of Medicine said he's considering asking an ethics board there to consider a study in which families that have a child could use PGD to select the opposite sex for a subsequent child.

In the Denver area, Conceptions Women's Health and Fertility Specialists began offering PGD for family balancing after a couple with three boys came in and asked whether it would.

Fairfax, Va.-based Genetics & IVF Institute allows families to use PGD for family balancing, as well. It even offers an alternative, experimental method of sex selection that separates larger X-carrying sperm from smaller Y-carrying sperm, allowing families to fertilize eggs with sperm that will result in the desired sex. The method, now in clinical trials, avoids the issue of discarding embryos that are the "wrong" sex but is less accurate than the nearly certain PGD method.

Sharla Miller is among those who have used PGD solely to choose a child's sex. The Gillette, Wyo., resident went last year to the Fertility Institutes in Los Angeles so she could use PGD to have a daughter. She and her husband, Shane, have three sons - ages 12, 9 and 5 - and she is pregnant with twin girls due in July.

"Ethically ... it's just like any other thing," Miller said. "My choice is my choice, and their choice is their choice. I did it this way, and I don't think it's a bad decision."

Free-lance writer Jennifer Merrill Thompson of Vienna, Va., a mother of two boys who gave birth to a girl 22 months ago with the help of MicroSort, just published a how-to book on sex selection called Chasing the Gender Dream. It includes chapters on methods including diet, centrifugal sperm-spinning and PGD.

Washington resident Laurie Goldberg Strongin and her husband, Allen Goldberg, used PGD for a different purpose: to select healthy embryos that would be a tissue match for a son with lethal fanconi anemia. Though she went through nine attempts, Strongin never got embryos that where both free of disease and a match.

Her son, Henry, died in 2002 at age 7. But Strongin has continued to speak out in favor of using PGD for tissue matching, saying, "I think using science and technology to mitigate pain or to save lives is an ethical, moral use."

She is less enthusiastic about its use as a gender-selection tool. "It concerns me a little bit that they think that, 'If only we had a son or a daughter, life would be perfect,' " Strongin said. "Life isn't perfect."

The Genetics & Public Policy Center, which sponsored a January forum at which Strongin spoke, is seeking to educate the public about the science of PGD while fostering debate on its uses. The affiliated Phoebe R. Berman Bioethics Institute at the Johns Hopkins University plans another such forum Thursday and is conducting extensive surveys on the topic.

As controversial as some uses of PGD are, the technique doesn't manipulate genes. It simply allows parents to choose embryos for characteristics already present.

But genetic variations - or combinations of them - responsible for many conditions and abilities have yet to be identified. Work remains, for example, to determine why some people exhibit nerves that fire off impulses more quickly, enhancing athletic ability.

"In theory, you could say, 'I want a kid who's a sprinter: Let's insert the gene,'" said Baylor's Simpson. "But how do you know you're not going to insert it in another gene that's going to make it worse? I think it's going to be a long time before we know all the interactions on a cellular level."

Others think that future is nearer than some dare imagine.

"Designer babies are going to happen in my lifetime," Shady Grove's Kearns said. "There's no question in my mind about that. But just because we can doesn't mean we should."
To learn more

What: Panel discussion on pre-implantation genetic diagnosis by the Phoebe R. Berman Bioethics Institute at Johns Hopkins University

When: 11:30 a.m. to 1:30 p.m. Thursday

Where: Baltimore Country Club, 4712 Club Road

Tickets: $45. Scholarships available.

Information: 410-516-0415

On the Web:

Copyright © 2004, The Baltimore Sun

Wednesday, May 05, 2004

I started to cry sitting at my desk yesterday. I totally wasn't expecting to do that. I was listening to this CD that someone sent me and this song came on.

I wasn't listening too closely, but when this song started to play I heard and felt every word. It is supercorny, but so am I.

My Son And I
Neil Sedaka

My son and I
We will keep on goin'
For all our time and through our lives.
He's everything a dad could ever wish for,
He brightens up my every day.

He has a dream
And I know he's gonna make it,
He knows that he could always count on me.
We'll laugh and cry and share a tender moment,
This boy of mine, I love him so.

When I see him smile
It fills me up with gladness,
He's sunshine and he's laughter all combined.
He picks me up, he cheers me through the bad times.
A wondrous thing, my son and I.

Is this the little boy I know,
Playing with his Lego long ago,
Watching all his programmes on his TV screen,
It can't be that far back as it might seem.

The first day that he left for school,
I cried as if I was a fool.
He turned into a really grown up guy,
I'll love him 'til the day I die.

My son and I
We have our little difference,
Don't see eye to eye on all the world
But we'll make it through because we love each other
It'll always be just me and you.

But if he goes away
I don't know how I'll make it
But when he comes back the sun will shine again.
I'm a lucky man to have him here beside me,
It'll always be my son and I,
It'll always be my son and I,
Always be my son and I.

He got everything right. XMKiDS always plays this Paul Simon song from the Wild Thornberry's movie about a dad and his daughter. I always feel left out when I hear it, so I am glad to know there is a good father and son song. Gotta love a song that talks about Legos, right.

I love you big guy.

Tuesday, May 04, 2004

Your t-ball bat is rolling around in the back of the minivan. Jack is using it now. The "ping" sound I hear whenever it rolls into something in the car makes me think of you. This weekend I kept thinking, "we were so close."

We went to the cemetery on Sunday afternoon. I brought this CD of your favorite music with us for the ride. I cried the whole way out. I was fine once we got there. We couldn't stay long. They close so early. We said "hi" to Grandma.

On the way out Jack said he was going to tell you how good he has gotten playing the Pokemon Saffire Game Boy game. I left you a little Pikachu. I hope the lawnmowers don't get it.

I told Mom that I think we get the urge to come to see you when things are going really well. She agreed.

I love you. It's been a while since I told you that but I think it every day.

Joe is ready for different books when we read in bed at night. Every night I look for something familiar and something he hasn't seen before. Last night I pulled Where the Wild Things Are out of the bookshelf.

The book was given to you by Mom's friend Charles. I like what he wrote.

Do you remember how we used to "wild rumpus." That was fun dancing around like that.

Monday, May 03, 2004

Nice to see the rest of America is okay with what we did. I'd be worried about this country if they didn't. I hope the President and people who run the country are mindful of what the people think, and more importantly of the families who need this kind of medicine.

Later this month Mom is speaking again to tell people what we did and why we did it. I will report back on that.

Genetic Testing of Embryos to Pick “Savior Sibling” Okay with Most Americans
New Survey Explores Attitudes on Preimplantation Genetic Diagnosis (PGD)

Washington, D.C.— A new survey by the Genetics and Public Policy Center at The Johns Hopkins University shows most Americans approve of using genetic testing and selection of embryos to make sure a baby will be a good match to donate blood or tissue to a sick brother or sister. But, they disapprove of selecting an embryo based on whether the baby will be a girl or boy.

Preimplantation genetic diagnosis (PGD) involves the removal and genetic analysis of one or two cells from embryos created through in vitro fertilization. Test results are then used to select embryos to transfer to a woman’s womb to initiate a pregnancy. While PGD was originally developed to prevent transmission of serious diseases, recently it has been used to pick embryos based on sex or suitability as a tissue donor.

To measure public attitudes toward these uses of PGD and other reproductive genetic technologies, the Genetics and Public Policy Center, which is funded by The Pew Charitable Trusts, conducted a detailed survey of 4,005 Americans, the largest to date by far.

The survey showed that 61 percent approve of using PGD to select an embryo that could benefit an ailing sibling, while 33 percent disapprove of this use. In contrast, 57 percent of the respondents disapprove of using PGD to select embryos based on sex.

“There is strong support for using these technologies when there is a health benefit, even when that benefit is for another person, but this support coexists with deep-seated worries about where all these new technologies may be taking us,” said Kathy Hudson, Ph.D., the founder and Director of The Johns Hopkins University Genetics and Public Policy Center.

For example, 80 percent of respondents were concerned that if not regulated, reproductive genetics technologies such as PGD could “get out of control.”

Uncle Stinky wrote a letter to the Washington Post. It is a great letter and says important things about war that people need to think about. It is too bad that the paper didn't include the fact that Bill when to St. Albans and served as a Marine in the first gulf war.

Jack is going to movie making and sports camp at St. Albans this summer. That is the place next to Beauvoir where Michael went to camp. Remember how you and me and Joe dropped him off there for a few days 2 summers ago when Aunt Abby was out of town. That hill was so steep and you walked the whole way.

Jack is now reading the KidsPost page in the morning while he eats his cereal. He started doing this when he stopped watching TV. This letter was in a different section.

Who Defends Our Nation?

Saturday, May 1, 2004; Page A20

Perhaps Pat Tillman's death can contribute to the nascent dialogue about who bears the human cost for our collective defense ["Ex-NFL Player Tillman Killed in Combat; Army Ranger Turned Down Millions to Serve His Country in Afghanistan," front page, April 24]. That Mr. Tillman traded in his football wealth and fame to quietly serve his country is admirable; that his example is so rare is a shame.

Young people in general are reluctant to serve, and the nation's best and brightest are rarely found in uniform, according to military sociologist Charles Moskos, who notes that only seven of the 1,100 members of Princeton University's Class of 2003 opted for military service.

We are fighting multiple wars of considerable size and unknown duration, but we have heard nothing about financial or physical sacrifice from the administration. Only a few brave souls, such as Rep. Charles Rangel (D-N.Y.) and Sen. Chuck Hagel (R-Neb.), have dared to begin a long-overdue discussion about conscription.

If we are not willing to collectively risk disrupting our lives, as Mr. Tillman selflessly was, perhaps we should not be so quick to engage in armed conflict in the first place.

BILL DELANEY a.k.a Uncle Stinky