We attended our first MPS Society Family Conference in St. Louis, MO, July 28-30, 2011. It was both a great and frightening experience, all at the same time.
Where do I start? Traveling with Jarod is always "interesting". I'll use that word rather than many others I could. He is getting less flexible the older he gets, so he is less willing to leave all of his comforts and routines of home behind. He's not big on hotel stays or site-seeing or any of the other things other kids might find fun or adventurous. We have to pack as many of his toys, books, etc. that we can from home - and even still he'll think of something once we are in our destination that he wants that we have left behind. And, unfortunately, his behavior dictates where we go and what we do. He did as well as he could on this trip, but overall it was pretty frustrating for Mom and Dad.
The highlights for us of attending the conference were meeting so many great families who are walking in our shoes and all of the knowledge we came away with from the informational sessions. It's incredible how there is an immediate kinship between MPS families and everyone loves meeting everyone else's kids. We realized, in meeting so many other children afflicted with Sanfilippo Syndrome, that we are blessed that our kids are doing so well. Even as Jarod has begun his decline, he is still physically active and is still able to understand and communicate. I think our children may have been the only ones there not in diapers, if that says something.
The negative? It's extremely hard as a parent of a newly diagnosed child (and now children) to see the the various MPS diseases in all of their stages: kids newly diagnosed who are still fairly healthy to kids whose bodies are so ravaged by the disease they can no longer speak, have limited or no mobility and have to be fed through tubes. It's scary to know that's what lies ahead for your own children. It's hard not to look ahead and wonder how we will manage.
Next summer the conference will be in Boston and we will do everything we can to attend again. The friendships we made are invaluable and I want to make sure we are there each year to help and support others face-to-face just as much as others did for us this year.
Where do I start? Traveling with Jarod is always "interesting". I'll use that word rather than many others I could. He is getting less flexible the older he gets, so he is less willing to leave all of his comforts and routines of home behind. He's not big on hotel stays or site-seeing or any of the other things other kids might find fun or adventurous. We have to pack as many of his toys, books, etc. that we can from home - and even still he'll think of something once we are in our destination that he wants that we have left behind. And, unfortunately, his behavior dictates where we go and what we do. He did as well as he could on this trip, but overall it was pretty frustrating for Mom and Dad.
The highlights for us of attending the conference were meeting so many great families who are walking in our shoes and all of the knowledge we came away with from the informational sessions. It's incredible how there is an immediate kinship between MPS families and everyone loves meeting everyone else's kids. We realized, in meeting so many other children afflicted with Sanfilippo Syndrome, that we are blessed that our kids are doing so well. Even as Jarod has begun his decline, he is still physically active and is still able to understand and communicate. I think our children may have been the only ones there not in diapers, if that says something.
The negative? It's extremely hard as a parent of a newly diagnosed child (and now children) to see the the various MPS diseases in all of their stages: kids newly diagnosed who are still fairly healthy to kids whose bodies are so ravaged by the disease they can no longer speak, have limited or no mobility and have to be fed through tubes. It's scary to know that's what lies ahead for your own children. It's hard not to look ahead and wonder how we will manage.
Next summer the conference will be in Boston and we will do everything we can to attend again. The friendships we made are invaluable and I want to make sure we are there each year to help and support others face-to-face just as much as others did for us this year.
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