Even though I’ve strayed from the food path here and there on this blog, I’m about to do something I’ve never done before.
That link will take you to a video of a bright, darling boy named Henry, shortly after his third birthday. The voice of the person you don’t see is my dear friend, Henry’s mom, Jenn. Henry was going through a very precocious and adorable phase of loving the Jim Lehrer Newshour on PBS. We all kind of fell in love with him for that, and for so many other things.
Henry died last year at the age of ten, from a terrible disease called adrenoleukodystrophy. It was truly horrible. It is a genetic disease, and because Henry was showing symptoms, they were able to test his brother, Eli, who also had the disease but was not symptomatic yet. It was too late for a treatment for Henry, but Eli received a life-saving stem cell transplant, and will survive. Eli received this gift through an organization called Be the Match, which matches donors and recipients of bone marrow and stem cells. Coincidentally, we have a few friends who have been through this arduous process, and the results are nothing short of astonishing.
If Henry were alive, tomorrow would be his 11th birthday. Jenn and her family would be ordering balloons and cake, and inviting friends to sing and celebrate. Instead, this remarkable family is going to celebrate Henry’s birthday by walking in the Be the Match Walk+Run in Minneapolis.
Here is what Neil said at Henry’s funeral. As we sit with Jenn and Troy on the mourning bench, we struggle with what we can possibly do. We can’t bring Henry back. We can’t take away their grief. One thing that we can do is to support the Schally’s in their fundraising efforts for Be the Match. Their team donation page is here. If you are so inclined, please donate to celebrate Henry’s birthday with his family. Also, please register to be a match. You could – quite literally – save someone’s life if you are matched with a recipient.