Forgetting, and not

Posted Wednesday November 12, 2014 by Melissa

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.

  1. What’s your name?
  2. How old are you?
  3. Where do you live?
  4. What’s Mommy’s name?
  5. What’s Daddy’s name?
  6. Who are your brothers?
  7. What’s Baba’s name?
  8. What’s Nana’s name?

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.

And that reality exists for so, so many of our friends. Read this recent post for example. Or this one.

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?

FlashcardsAnd what brought this memory to life?

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.

2 Responses to “Forgetting, and not”

  1. So amazing! We are so thankful for you, Melissa. Such a blessing to our lives and the rare disease community.

  2. With as many physical problems that I’ve had to deal with, I could not imagine also losing my mind to MPS. Sometimes I worry that there might be a slight possibility that I was misdiagnosed with MPS 1, and that suddenly I will start losing my memory. Thanks for sharing, in some weird – and possibly twisted way – it brings me a little peace.