Wednesday, August 18, 2010


"Does this mean I'll get away from having MPS VI now?"

This is the question that Isaac posed to Ellen before dinner tonight. We had just received a call from Dr. John Hopwood, one of the leading researchers on the planet in regards to lysosomal storage disorders. Dr. Hopwood was calling to discuss some of the findings in his latest research project, a project partially funded by The Isaac Foundation, and Ellen was explaining some of the exciting news with Isaac when he asked the question.

This has been happening more and more lately, and it's been very difficult for me to try and answer. Not because I don't have an answer for him, and not because I don't have hope, but it's difficult because I know how very much Isaac is thinking about his disease, and I can see how he is struggling to understand how and why he is different then the other kids around him. He wants be the same height as his brother, and he wants to be able to climb to the top of the climbers without having to have mom or dad there to spot him. And he wants to not have to go to the hospital anymore. But mostly he just doesn't want to have MPS VI, and it breaks my heart to see him struggle.

Thankfully, Ellen is handling things well - she's a pro, really, and I envy her strength as she calmly discusses Isaac's disease with him and as she patiently shows him that MPS simply makes him that much more special. And then he'll smile and say "you're right!" and the struggle is done until next time.

I can't wait for the day when Isaac asks that same question and we can emphatically say "Yes!" What a wonderful celebration it will be.

The photo above was shot by John Mayer last week during our stop-in to say hello. Was too cute not to post, and I don't think he'll mind.

Thanks again for your support. You can't imagine how much we appreciate it.

With Love,


Shannon said...

My little boy is five, and he is going through the "question" phase himself. Although his line of questioning consists mostly of how babies get here and how they're born etc and compared to the questions you're fielding, these ones should be easy. You are seemingly wonderful parents dealing with many common parent issues on a much deeper scale. And just as you have inspired Isaac, as he grows he will continue to inspire others. I hope one day our boys can meet! I've promised my little guy a John show on the next tour ;)
Shannon (Ottawa)

no_such_thing said...

Awww very cute pic. keep your positive attitude up. I know it might be hard at times, I know from experience. I don't have MPS, but MS. I was diagnosed when I was 16. The road had been a bumpy one, but we all have to stay positive!

Your son is such an inspiration to me. I pray that someone finds a cure for MPS, and MS soon. :)

Hugs to little Isaac!


P.S I love JM too.