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.

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.

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

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.

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.”

---

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!

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

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

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.

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.

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When interviewed, Madeleine couldn't contain her excitement.  “It's pretty cool," she exclaimed.  “I'm not really nervous now, but I'm sure when the day comes I will be.”

This eighth-grader from Hampton Cove Middle School was fortunate enough to have her mother, Nancy Finnegan, write to the Make-A-Wish Foundation.  Apparently, Madeline and her older brother Blaise both have a rare blood disorder known as Fanconi anemia.  It could cause bone marrow failure, and often leads to leukemia.  While their health is stable for now, they might still need bone marrow transplants in the future.

Last summer, their mother decided to do something extraordinary and make Madeline's dream a reality.  Eventually, it paid off and the whole family was invited to stay in New York for four days to see how Madeline works it in front of the America's Next Top Model judge.  But in the end, it was all about having fun.

“My friends are so excited.  They've been asking me to take tons of pictures, which I will,” she said.

America's Next Top Model is set to air its 12th season later this month on the CW.  The 13 contestants have been revealed, with Tyra Banks, J. Alexander, Paulina Porizkova and Nigel Barker returning as judges.


-Maria Gonzalez, BuddyTV Staff Columnist
Source: CW, The Huntsville Times
(Image Courtesy of the CW)

There is something that is really big these days online called Facebook. Your brother Jack just got started tonight. I know this might sound strange, but he is now Facebook "friends" with your friends. Jack also became friends with cousins Michael, Hannah and Emma. He is "chatting" right now with Sam Shoyer.

Here is something that Emma posted yesterday. It appears you're on Facebook too.

I haven't written in a while. There is a lot going on. As I always say, "just 'cause I haven't written doesn't mean I'm not thinking of you."

We had a vacation and an Inaugural since I last wrote you. I'll get you caught up soon. Sorry.

Inaugural (Cold)



Vacation (Warm)

How terrible/crazy is it to see these both in the newspaper on the same day. Actually, the same thing happened before. I will look back and find that.

Unfortunately, we know that whole ventilator/University of Minnesota thing. Let's hope for a good outcome.

Home builders create a special place for Dylan
By HANK DEWALD
HERALD STAFF WRITER

GASTON – When Dylan Moore and his family return from Minnesota where he is receiving treatments for the rare disease, Fanconi anemia, they are in for a big surprise thanks to a few special people and the Roanoke Valley Home Builders Association.

Since the progression of his disease has severely weakened his immune system, Dylan, who has always had to share a bedroom, will need his own separate room and modifications made throughout the home, said Joey Elias, president of the builders group. The main problem was the Moore’s home just wasn’t big enough to create a separate special area for Dylan.

There was, however, a nice carport attached to the brick home. It doesn’t take much imagination to guess what the group of builders decided to do with that carport, but most would think one simple bedroom. What the group has done is transform the carport into a bedroom suite, complete with its own bathroom and closets. The suite is attached to Dylan’s parents’ bedroom through their bathroom, with a separate laundry area and hallway entrance that now exits into a new bricked-in carport.

Elias and several others were busy putting the finishing touches on the construction Friday, installing trim work and getting everything ready to paint, a chore planned by the Moore’s family and friends. “This wasn’t all our idea,” Elias quickly pointed out. “The people behind all this have done a lot more and they really don’t want to be mentioned. It’s just that we, as a group, try to do something like this, at least one project each year, so when they contacted us, we jumped right in.”

When he says “jumped right in,” he wasn’t kidding. The group of RVHBA members and friends started the work on the Moore’s house the week before Christmas. What the group of builders has accomplished is amazing. “We’ve got people who are involved in home building from every trade, so I feel badly that we are here now, because we just got here,” Elias said of the group working on Friday. “All of the others did most of the work.”

Elias said Mike Copeland did the framing, Rightmeyer Equipment Rentals provided all the landscaping and heavy equipment used and most of the concrete work. Lloyd’s Decorating Center donated the paint supplies and will help with the flooring. Weaver Insulation donated all of the insulation and Bill Freeman Roofing donated all the labor to seamlessly blend the new roof in with the existing one. “Once again, I feel badly because I know I’m leaving out so many people who have been involved in Project Dylan,” Elias said.

There is one big push going on now to finish the project because the Moores are expected to return home by the end of January. Elias and the guys working Friday were a whirlwind of activity. Once they are out of the way, the final painting will start and the flooring will be installed. The finishing touches will be the landscaping, which John Pittman Landscaping will handle.

What the Moores see when they get home will surely amaze them.

With Dylan’s special needs, this group of builders has made life much easier for the Moores. Elias said it is just another example of how caring people are here in the Valley. “When we heard about the family in need, we all just came together and got it done. The one’s who called us are the one’s that deserve the credit, but that’s just the kind of people they are,” said Elias.



Moore family requests prayers as Dylan worsens
By DELLA BATTS
Daily HERALD STAFF WRITER


FAIRVIEW, MINN. — The family of Dylan Moore is asking for prayers as a new mass was found behind his heart this week and he is now in intensive care, once more on a ventilator.

The 8-year-old child was reportedly scheduled to leave the University of Minnesota Children’s Hospital in seven days, and the family had been counting down until the time when they could all be reunited.

His mom, Betsy, on the family Web site, caringbridge.org/visit/dylanmoore, said, “I can’t believe that in seven more days, we should be home. Here we sit in ICU praying harder than we ever have before that we will all eventually come home well.”

Moore was born with Fanconi anemia, a rare genetic disease, distinguished by short stature, skeletal anomalies, increased incidence of solid tumors and leukemias, bone marrow failure and cellular sensitivity to DNA damaging agents such as mitomycin C. He recently underwent a bone marrow transplant.

Moore’s most recent tumor effected his heart and lungs. He is on chemotherapy now, in hopes of shrinking it quickly, but according to Betsy, Fanconi patients don’t fare well with chemotherapy. “We pray that he will not have to have any more radiation because FA patients do not tolerate it well. If the mass hasn’t decreased he will have to have more treatments to shrink the mass until the treatments, the T-cells, or Dylan’s immune system can fight this.”

Moore’s Web site has daily updates on his condition and allows messages to be sent to him and the family. The family said to please continue to send messages as they mean so much to her son. “Thank you all for all of the prayers and support. It means so much to us. Dylan wanted to hear all of his messages tonight so I read him every one. Your support has really helped. Keep the messages coming. We love to hear from all of you.”

Hen, this is how our world went from perfect to topsy turvy. The only thing you don't hear in this video is the sound of the timebomb starting to tick.

Nana unearthed this video when we were out in St. Michaels for New Years. It was your Yahrzeit, the 6th of Tevet. This was incredibly hard for me and Mom to watch. It was the first time we'd ever seen it. All of a sudden the future goes from innocent and bright to dark and scary.


Welcome to the world beautiful Henry from Allen Goldberg on Vimeo.

Well, at least I knew you were going to be a girl. I don't remember that Mom thought you'd be a girl. Way to prove 'em wrong, boyo!

Published/Last Modified on Friday, December 26, 2008 11:03 AM CST


Dylan shows signs of improvement
Della Batts, Herald Staff Writer

ROANOKE RAPIDS— After two months, Dylan Moore is starting to show progress in his recovery from a bone marrow transplant he received in October. Moore, a 7-year-old who has stolen the hearts of all who know him, suffers from a rare form of anemia, Fanconi anemia.

Family and friends have rallied to support the family, and several fundraisers sponsored by the Eagles Club and many others were held to provide for the family during Moore’s lengthy illness.

Moore suffered from kidney failure early on after the procedure and had to endure dialysis daily. He recently developed an infection, similar to mono, and was put on a respirator. High fevers and  unanswered questions plagued the family as everyone held their breath and prayed for a miracle.

Moore was finally removed from the respirator about a week before Christmas. Worry still prevailed however, as his kidneys still refused to function.

Early Christmas Eve morning, prayers were answered as Moore’s kidneys functioned for the first time since his surgery. “It was only a little and it was the color of coffee … This is a very good sign that his kidneys are trying to work some!!!!” wrote his mother, Betsy.

She went on to say that he is still having trouble with the dialysis, his blood pressure jumps all over the place, his heart rate slows to unthinkable levels, and doctors don’t understand why he has such sever reactions. Perhaps the new developments in his recovery will negate his need for dialysis soon.

In the meantime some of his family has come in and he will be able to see them for Christmas.

December 18, 2008, 2:40 pm

Life After Losing a Child

By Lisa Belkin

I met Allen Goldberg more than eight years ago, when I wrote an article about his son Henry and the fight Allen and his wife, Laurie Strongin, waged to save the little boy’s life. They lost, and Henry Strongin Goldberg died six years ago this month, at the age of 7.

Allen chronicled Henry’s last days in a blog, and, after his death, wrote letters to the boy. At first there were several a day. As Allen healed, the letters were less frequent but still steady. They brought Henry news, mostly about his younger brothers — Jack, now 12, who was his best friend, and Joe, now 7, who was only a year old when Henry died.

What follows is a letter from Allen to Henry, about keeping memories alive. It’s about the ache of parenting when one of your children is gone, about creating memories, and about introducing your youngest son to the older brother he never really knew.

By ALLEN GOLDBERG

Dear Henry —

I made a space on Joe’s night table for that photo book of pictures of you and him together. It is right next to his iPod, his Spongebob early reader books, his mini footballs and assorted baseball cards. As far as I’ve noticed, he doesn’t look at the photo book. I can’t blame him. It is pretty thin.

After you died I don’t think I gave a whole lot of thought to how Joe would remember you. Mom and I have seven years of memories of living, loving and trying to save your life, all laser-etched into our hearts. You and Jack had a special relationship that I know he treasures, and that I captured in hours of video and albums full of photos of the two of you on the beach charging into battle shoulder-to-shoulder against imaginary dragons and laying around hospital rooms. He knows you, and he misses you in his own way that I can’t even begin to understand.

But for Joe, he never got to throw a ball with you or make a snowman with you in the front yard, or stand in front of the TV when you were trying to watch so you could point out in true Henry fashion, “Hey, Joe, you make a better door than a window.”

Joe is now exactly as old as you were when you and I made that last father-son trip to Minnesota. Your doctors were only going to fine-tune your meds then, not show me how to remove a breathing tube so you your life could gently come to a close in Mom’s arms. But it all went very wrong very fast. At age 7, you were old enough to understand how sick you were, and maybe you were aware that you might die. Mom used to think that after a time you were making it O.K. for us to let go of you. Either you were wise beyond your years, or there are things in the way life and death work that we don’t fully understand.

Making the photo book for Joe added a new dimension to the sadness I feel about your death. Joe is now very aware that he didn’t have enough time with you; the lack of photos of the two of you together underlines that sad truth. “Brothers: Joe and Henry” has a mere six photos of the two of you in it. That’s all we have and together they hardly add up to a book. I even threw in a few pictures of you playing baseball and other sports so Joe would know that the two of you have a lot in common.

To be honest, you don’t look so good in the pictures I managed to find because you were so sick when they were taken. The great things about the pictures of you playing sports is that you look like you — in other words, strong and handsome.

In the later, sicker photos, you were huge, blown up on steroids. I do have video that I took of you the day Joe was born, a day when you were stuck in Georgetown Hospital and Mom was over at Sibley Hospital, where she’d just had your baby brother. You gave a warm greeting to Joe and said “hi” to Mom. It’s a reminder to me of another bunch of videos, the ones I took right after you were born and were still in the NICU, and that I took down the hall to Mom because she wasn’t allowed out of bed and you weren’t able to leave the incubator. So I guess we were used to making do with pictures from the get-go.

I don’t know why I didn’t take more pictures during the year of you and Joe. Maybe it was because things were pretty crazy with a new baby and you in and out of the hospital. Maybe I was so confident you were going to get better that I didn’t think I would need to use photos as a way to help Joe know you.
I certainly take a lot of photos now, though. This fall, one of the parents at Joe’s baseball game asked me if photography was my hobby because I am armed with a still camera and a video camera at every game. The honest answer came tumbling out of my mouth. I told her that I take all these pictures because Joe had an older brother — you — who died, and I have a need to make sure I capture everything in Joe’s and Jack’s lives in case something ever happens to them.

I imagine that wasn’t the answer she was expecting.

I don’t just take photos of your brother, though; I take all the kids. And after each of the Joe’s games, or a school assembly, or anything, really, I immediately scan through all the shots and e-mail the best shots of other kids directly to their parents.

I am certain there are photos of you out there sitting on someone’s camera or computer. Maybe even photos of you and Joe.

Love,
Dad

Two more things I should mention:

First, Laurie and Allen have created the Hope for Henry Foundation in his memory, to bring gifts and parties and smiles to children who spend much too much time in the hospital. I am on their board of directors. You can learn more about their work here.

Second, today is Allen’s birthday, one week after the anniversary of Henry’s death.

First-ever Japan Wish flight takes off for Disneyland

Sunday 21st December, 06:27 AM JST

American Airlines and Make-A-Wish Japan, the local office of the Make-A-Wish Foundation International, on Saturday sent Omoi Sendai, a junior high school student from Toyama Prefecture, off to Los Angeles on the inaugural Japan Wish flight. Omoi, who is battling a complex medical condition called Fanconi anemia, has had a long-standing dream of going to Disneyland in Anaheim, California.

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Omoi Sendai, center, and his family stand before a cake prior to their departure from Narita airport on Saturday.

Masami Yagi, president of Make-A-Wish Japan, said at a send-off reception, “Granting this wish of Omoi’s to go to Disneyland with his family brings the total number of wishes we have been able to grant over the years to 1,290. We are so happy for Omoi and hope he has a wonderful time.”

Upon Omoi’s arrival at the Los Angeles International Airport, he and his family will be welcomed by volunteers from the Something mAAgic Foundation, a non-profit organization made up of current and former American Airlines employees that support the Make-A-Wish Foundation as it creates magical memories for children with life-threatening medical conditions.

Omoi’s dream will come true as he enjoys spending time at Disneyland with his family and a volunteer escort from Make-A-Wish Japan. Omoi will return to Japan on Christmas Day.

An annual event since 1996, WishFlight sends families of children with life-threatening medical conditions to Orlando each fall to experience a week of fun at Give Kids The World Village and area theme parks. Since 1996, 270 children have participated in WishFlights and more than $1,000,000 in cash and in-kind donations has been raised by Something mAAgic to send children from Canada, Mexico, Europe, Latin America and the United States to Walt Disney World.

This flight is the first-ever Japan Wish Flight, a similar collaboration by the organizations listed below to make one of the dreams of a Japanese child facing difficult medical challenges come true.