For Jack

Posted Sunday December 01, 2013 by Melissa

JackFowlerThere aren’t really words to describe what Jack means to me. Besides Case, Jack was the first boy with Hunter Syndrome that I met. His mom, my friend Jamie, welcomed me to her city, her airport, her car, her home, her family, and her life… without ever having met me in person. I even ponder whether we’d spoken on the phone except when she picked me up from the airport.

They were our lifeline when we both lived in and out of the dark place for that first year after diagnosis.

If Jack needs something, there’s not much on this earth I wouldn’t do.

Jack needs something.

He needs IT Idursulfase, the drug Case receives that has stabilized him (and more) over the last three years.

Jack, on the other hand, has lost.

If I had to say that Case had a best friend, which is a difficult concept for these boys, it would be Jack. Every boy with Hunter Syndrome, to Case, was named “Jack” for a very long time. Case has a daily “chat” with Jack by watching a video of him helping his mom make me a burger when I was at their house. Case grabs his own condiments and helps Jack via video. He talks with him.

I’ve watched them grow together. But I’ve also watched them grow apart, cognitively.

And to say that kills my heart is a monumental understatement.

So this post is for Jack. For the lengths to which I will go for him. For Jamie. For life.

See Andrew McFadyen’s post about our hopes for Jack’s treatment.

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