I probably shouldn't have played Somewhere Over the Rainbow in your room as you lay in your comatose state and died. It ruined me for this song. Whenever I hear it I go right back to your room, which is a good thing, but I can't help but be incredibly sad. So, here it is again, but in a very beautiful and wonderful video that Uncle Andy made. It was shown at the reception after Michael and Rachel's B'nai Mitzvah.



If you looked close, you can see you and Rachel. Here you guys are again.

When I was driving home last night I was listening to a special on XM radio that was playing the 100 greatest songs from the movies. The first song I heard was "Maria" which is from a musical West Side Story. I love the song and the movie. The next song was from a movie called Rocky, which is the story of a boxer - a man not a dog. I was feeling really good from hearing "Maria" and got excited for the Rocky music. But when it came on I just burst into tears. What, huh? I wasn't prepared for that to happen. I tried to figure out why and the only thing I could think of is that when the music to Rocky started to play I began to picture you with your punching bag in your hospital room. We had gotten you the punching bag and gloves to keep you active when you were in for transplant. Then when we went back the last time, we requested a bag and gloves again.

The number one song in the movies is "Somewhere Over the Rainbow." It is hard to argue that one.

After I got home, Mom and I took Liam back to his house. Liam and Jack had been playing with your R2D2, the one we bought when we broke out of the hospital for a day back in Minnesota. Remember how it would beep and talk and roll across the floor. I think it is still working on the same batteries that we put in for you. When we were leaving our house Liam asked if R2 could go for the ride back to his house.

Liam's mommy and daddy are in Seattle, where Liam's mom had a bone marrow transplant last summer. Mom and I made two stops on the way to Liam's house. One was to pick up a pizza for one of the teachers from JPDS, who is home on bedrest. She is going to have twins soon and her doctors told her to stay in bed. When we got to 2Amys, which is next to Cactus, we ran into my friend Matt Paul and his wife and their son Jake. Matt has been coming over to the house every week or so to sit and talk. His son Julien died in March. Julien had a transplant just like you. It was nice to see Matt's family out. They live not too far from Cactus. After we visited for a little bit we went and dropped off the pizza. G'veret Epstein was there. Finally, we got to Liam's house and he brought R2 in to show his nanny.

With all of those errands taken care of, Mom and I motored over to Adas Israel for the evening's main event. There was a Engagement Party for Rabbi Winnaker and Doctor Mendelson. I saw one of the doctor's from the 5th floor at Georgetown who used to take care of you all the time. He is very nice and will be taking over as Chief Resident when Dr. Mendelson moves to New York. Dr. Mendelson introduced us to her parents as "Henry's parents." I liked that. She is one of the great ones. I wonder if the story of them "meeting" at your funeral will be in any of the toasts or whatever is said at the wedding.

It was a pretty Henry emotional day for me yesterday. It all started when I read a story in the newspaper about a 13 year old kid named Mattie Stepanek who died at Children's Hospital. I had seen him on TV a little while ago. He was a poet. He also had a pretty bad disease called Muscular Dystrophy. His motto was "Remember to play after every storm."

That made me think of you and the Hope for Henry Foundation. This is the "vision statement" that Mommy wrote for the Foundation.



The Hope for Henry Foundation (“HFHF”) was established in 2003 to create a legacy for Henry Strongin Goldberg, who died at the age of seven from Fanconi anemia, a rare, fatal genetic disease. During his short life, he taught his family, friends, doctors, and all who came in contact with him how to live well and laugh hard – even as he battled a terrible disease. Henry embraced each opportunity for living completely and reminded the rest of us to do so. His sparkly eyes, mischievous grin and infectious smile taught us the importance of maintaining normalcy within the family unit in a life fraught with illness and uncertainty. He had ice cream for dinner and transitioned from the hospital to running a lemonade stand in a matter of minutes. He did all these things because at that moment in time he could – and because he knew enough to go when the going was good. HFHF will continue Henry’s magical way of making each day matter.

I never knew that so many little kids die. I am really not feeling up to playing or lemonade stands right now, but I will get it together.

I love you.

Ray Charles died last week. He (among others) sings "Over the Rainbow" from the Wizard of Oz. I always cry when I listened to that song. Once we were driving outside of Cleveland - I think we were on our way to Minnesota for transplant - and I was listening to a CD I made with that song on it and crying and crying. Mom and you guys were probably all asleep or something. I played a different version of that song for you in your room in the PICU. Israel "Iz" Kamakawiwo'ole is the guy who sang that one. I don't know if you heard it or heard anything. I hope you did.

They did a story on TV about how loud hospitals are and how it is hard to get better because of all of the noise. You can watch it.

We never got any sleep with all of the beeps and alarms going off all night. That was no fair. The story talks about that and also says that nice music helps you get better. We tried.

One thing that I want to do with the Hope for Henry Foundation is give XM radios to all the kids going through transplant. I think that XM Kids will be a lot of fun for any kid sitting in the hospital. Aside from fun songs like Poop Goes the Weasel, XM has bingo, just like the hospital bingo you used to play on Thursdays in Minnesota.

I went to Chicago this Saturday for the day last weekend. It was a meeting of Fanconi anemia families that raise money for research. Mom and I definitely think it is important to continue to help and make sure that it is easier on all families that come after us. I hear from Dr. Auerbach that Memorial Sloan Kettering Hospital in New York is having a lot of success with tough Fanconi anemia transplants.

I hadn’t really thought about the meeting much before I got there. When I walked in I was surprised to see Molly’s parents. I like hanging out with Molly’s dad, Jack. He is a super guy and I wish I talk to him more.

When we all went around the room to introduce ourselves, everyone said who they were, who they were married to and who were their children. When we got to me, I said I was Allen Goldberg, and I am married to Laurie Stronging, but I just couldn't say your name. It wouldn't come out. Tears were all ready to come out but not your name. I just couldn't do it. I pointed to the man next to me hoping he would just continue by introducing his family and he did. I am sorry. The thing I wanted people to know the most was that I am the father of Henry Strongin Goldberg, Jack Strongin Goldberg and Joe Strongin Goldberg.

They gave everyone who was there a handbook with ideas how to raise money. I looked through it and saw all of these things that we used to do.

One time Dr. D'Andrea came and spoke at Aunt Abby and Uncle Andy's house. Also, we did one of the first celebrity charity auction on Yahoo. And there was one fundraiser where everyone had dinners at their homes, invited friends, watched a video about you and then joined up later at Temple Sinai. That was a good one. You had a great time.



February 11, 1999, Thursday, Final Edition

For-Giving Technology

Shannon Henry

A Washington technology executive is using everything he's learned about computers and networks in a personal project that couldn't be more important: saving his son's life.

Allen Goldberg of VarsityBooks.com launched an online charity auction yesterday to raise money that will go toward researching Fanconi anemia, a rare disease that his 3-year-old son, Henry, has had since birth.

Hosted on Yahoo and running through Feb. 24, the auction is a philanthropic version of the now ubiquitous commercial online auctions. Yahoo entered the auctioneering business in September and has so far held 20 online charity events. It holds the auctions for free for those with a nonprofit status, says Karen Opp, Yahoo Auctions Producer.

Those who log on to Yahoo.com and click on its auctions section can bid on 100 or so items that Goldberg now has in his basement, including a jacket formerly owned by singer Mary Chapin Carpenter and a tennis racket signed by Gabriela Sabatini.

Goldberg hopes the auction will raise $ 7,000 to $ 10,000, all of it to go to the Fanconi Anemia Research Fund in Eugene, Ore. "It lets us reach as many people as possible," says Goldberg.

When Henry was born and diagnosed with the disease, Goldberg, then Webmaster at the National Association of Broadcasters, used the Internet to research what is still a little-known condition. Only 1,000 or so people, mostly children, have the disease. Soon after Henry's birth, Goldberg and his wife, Laurie Strongin, created a Web page, www.hsg.org, to keep friends and family updated on his health and encourage donations to the Oregon group. About $ 150,000 has so far been raised through the site.

Children with Fanconi anemia are usually born with myriad birth defects. The genetic condition can cause bone-marrow failure; the life expectancy for a child with Henry's type of the disease is four years.

"The clock is ticking," says Goldberg.

Dear Henry:

I don't know if I sent this one to you yet. It is a poem by Simon. It is about his Dad and you. It sounds so grown up that I can hardly believe you guys are the same age. Mom says that Simon always had a good vocabulary.

There Is a Place
There is a place, so very far away, over the
treetops, past the seven seas, even over the
rainbow. And into deep eternity. Over the
world's highest mountains, and in the soul
and the human mind, no one knows this place.

This place is better than $9857; even better
than a vacation. Will there be the light of
night at this place? Everyone is immortal here.

So this place you call wonderful, you must
take me there. The crystal clear water, the
great rain forest and the beautiful pyramids
make me shiver with glory. You must have a
huge imagination to see this place!

At this place you can lie in a hammock all
day long, looking at the beautiful view of
the sky. You can lie on giant flowers and
drink the nectar. One hour more than a day
is the time you can stay, so appreciate the beauty
and the sun of yin and yang.

Simon Thomas Imbot

Copyright ©2003 Simon Thomas Imbot

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[a.] Chevy Chase, MD [title] "There is a Place" [pers.] My dad died when I was almost 5. Now I am 7, I've lost 3 teeth, I'm in first grade, I have a brother Alex, he's five and a really fun mom. We live outside Washington, DC. I just started on poetry in school. I was inspired to write this poem by Emily Dickinson's poetry. The poem is about heaven. I wrote it to express how I feel about my dad and the other people that I know and love who passed away. I don't know what heaven is like, but what I think it looks like is this place in my poem.

Love you,

Dad