Wednesday, December 06, 2006

'Brave and hopeful and strong' District child loses battle against genetic disease

by Debra Rubin

"Mommy, this is a very bad last night of Chanuka." Those were the last words Henry Strongin Goldberg said before being put on a ventilator. And his last words ever.

Just days later, on Dec. 11, Henry lost his battle with Fanconi anemia, a rare genetic disease, dying from complications of a bone marrow transplant.

You said that 4 years ago last night. That was it. No more. On this day you were deep in a coma. You died 5 days later.

Yesterday, Mom and I were in Philadelphia at a fundraiser for the Hope for Henry Foundation. The fundraiser was in a store called Neiman Marcus in a shopping mall called King of Prussia Mall. I've always thought it was weird that there is a place in Pennsylvania called King of Prussia. Who is this King of Prussia?

While we were there I spoke on the phone with a reporter who was writing a story about the Radio Hanukkah channel that I am working on at XM. The writer asked me what it meant to me personally to get this channel on the air.

I told him that when I was growing up I used to listen to the two hour Jewish radio show that aired on Sunday mornings here in Washington. I said that I felt a certain amount of satisfaction helping XM put on the air an entire channel devoted to Jewish music and culture so people can hear much more than what they normally get on regular radio.

What I didn't say -- but what I feel -- is that I don't want there to be any more bad nights of Hanukkah.

As I work on this thing I cannot help but think about you and that Hanukkah four years ago.

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