Saturday, June 19, 2004
We need to do a website for the Hope for Henry Foundation. I need to get started on that. Jack is really good at using the Internet. Today we went to a website to get tips on playing Super Smash (Mario) Bros. He was having troubles with his jumps. He got really hysterical because he couldn't jump across something or another. I wasn't too sensitive to his "pain" because I thought it was a silly thing to get upset about. Instead of totally "poo-pooing" (not poop-related) him I told him to look for a solution on the Internet and we did it together. It worked out well.
The Web is a pretty cool thing. Remember that we found the "Blog" written by that woman studying seals in Antartica. The photos were so cool. We checked back each day to see more. That kept us busy for a good 5 minutes in the hospital. That is how Hanging with Henry and these letters got started. I wish I had begun way before that.
July 11, 1996, Thursday
An Infant's Struggle
Megan Rosenfeld and Joe Spencer
One of the most heart-rending home pages we've seen is the one dedicated to Henry Strongin Goldberg, an 8-month-old local child with Fanconi's anemia. This rare genetic disorder (one in every 100,000 births) is a precursor to bone marrow failure and the likely onset of aplastic anemia and leukemia.
His parents, Allen Goldberg and Laurie Strongin, started the page to raise money for research and to connect with other parents and well wishers. So far they have collected $ 68,000 for the Oregon-based Fanconia Anemia Research Fund Inc. They've also gotten much e-mail encouragement. "It was like a message in a bottle that we cast into the cyber-sea. The response has been incredible," Goldberg says.
Henry's Home Page includes articles about the disorder and the support group, and some very cute pictures of Henry and his parents. One of the articles is about a procedure that has helped extend the lives of other Fanconi patients. It is a cord blood transplant, in which blood from the umbilical cord of a newborn is transplanted instead of bone marrow to renew the immune system of the Fanconi sufferer.
Goldberg and Strongin had hoped that their second child, who is currently in utero, would be a perfect match for a transplant for Henry. The good news, they learned recently, is that the fetus is not carrying Fanconi's anemia; the bad news was that the baby is not a genetic match for Henry. However, there are five perfect matches in the national registry of frozen cord blood transplants, and he will be able to get one when it is medically appropriate.
The Food and Drug Administration has recently proposed to regulate this cord blood as though it were an experimental drug, and advocates of the procedure oppose this, saying that such regulation would make it far more difficult for most patients to get it. Henry's Home Page includes material about this debate and a request for readers to lobby the FDA. (July 26 is the last day for comments.)
Goldberg, who is the official webmeister at the National Association of Broadcasters, said he has learned an enormous amount from using the Internet, especially after Henry was first diagnosed and doctors were deluging them with technical information.
Henry has already survived heart surgery to correct a hole that was a result of Fanconi's. He was also born with an extra thumb; many children are born with more severe abnormalities. Except for that, and a somewhat small stature, he is developing normally, and his father says he "has a smile too big for his face."