My New Year’s Resolution is…

Posted Saturday January 04, 2014 by Melissa

New year’s resolutions are a staple of our society. We resolve to lose weight. To get organized. To spend less. To be unplugged.

I resolve to save lives.

Now, I can’t actually save lives. But I hope you see where I’m going with this. On the top of my mind, every day, and the top of most MPS parents’ minds, is to find a cure. Fundraising, advocating, networking…. all to an end.

I hope you will join us this year as we work to move science forward at lightening speed. I’ll have an exciting announcement in that regard within the next few weeks.

For now, I’ll show you my cure for now. Case continues to do amazingly well on IT Idursulfase. We hope that with the Phase III trial beginning sooner rather than later, hopefully along with compassionate usage for those boys who do not qualify, it will allow many more of our boys the chance to live longer lives and show their love and personalities even more than they do now.

This is my illustration of what I want for all our Hunter boys. Life. Laughter. Love.

Every new year, we do a questionnaire with our boys. It’s fun for us all to see the differences from year to year. This is the first year where I asked Case to answer the questions himself. You can see some of his challenges in focusing and listening, but he is doing so amazingly well. And he’s a goofball. And has his own ideas about what he likes and wants. I loved it.

And by the way, he’s now playing Angry Birds (or Angy Birds, as he calls it) on the TV (Roku). I can’t decide if it’s a good or bad thing that he wakes me up in the morning with, “Mom, can I turn on the TV and play Angy Birds?” 🙂

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One Response to “My New Year’s Resolution is…”

  1. Jamie Lynn-Brooks Fowler // January 4, 2014 at 1:05 pm

    I just LOVE those pjs on Case, too flipping cute!
    so confident in wanting to be a fireman!
    Brightened my day!

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