Four years ago, we had a book of photos of family members that was used as part of Case’s IEP. We didn’t want him to forget who the people were in his life. That is what Hunter Syndrome does, makes them slowly forget everything.
We asked Case 8 questions every day.
It’s not even so much that we wanted him to remember some of the questions (like that Mommy’s name is Melissa), but for some it was and for some, it was just a gauge of how well he could hold onto miscellaneous information.
Some days were better than others.
But as time progressed, the latter questions were left without answers.
Do I use the photo book anymore? No. But I’ve kept it, to remind myself that we’re only a drug away from living that life again. I don’t want to have that perspective, but that is reality.
So while Case no longer forgets easily, I am focused in my efforts to never forget that feeling of watching my child slip away. Because how else can I effectively fight for our community unless that feeling lives in my chest every day?
I’m now using the same photos from the photo book to create flashcards for Case to learn to read the names of these same people. Read. Names.
That is what this drug can do.
So when people in industry and at FDA ask me if I see a difference, that’s why I give them a blank stare.
This is a totally different world.
And I just want all my friends and their boys to be able to join us.