GSD get-together in Utah

Posted on 21. Oct, 2007 by Jillian in Glycogen Storage Disease, Glycogen Storage Disease Type 1A, research

This Friday we are driving to Utah to meet others (and their families) with GSD for the first time. The Make a Wish Foundation in Murray, Utah is graciously allowing us to use a conference room to meet in. There will be several families with various types of GSD as well as our favorite physician Dr. Weinstein! Ethan can’t wait to corner him and talk his ear off- again.
We’re all excited, but Mark and Ethan are ecstatic. Not only have they never met anyone else with GSD, but until March when we bought a copy of the Keeping Kids Healthy tape “Surviving Glycogen Storage Disease” that PBS produced, I don’t think they understood that there was anyone else with it. It’s now one of their favorite videos.

Even now, they still have so many misconceptions that I’m completely unaware of. Our 5 year old Mark for instance thought that he would be able to eat “bad for you food” when he grew up. He didn’t take it very well when we explained that, barring a cure, he would always have GSD. That sparked a huge melt down which took a good 30 minutes to dispel. It turned out that eating fruit and sugar wasn’t even the real problem at all.

I hope and pray that this trip will help the boys understand that they are not alone, but that there are others forced by their parents, to partake of cornstarch. Many thanks to all those who have spent so much time (and money) in pulling this off.

Is anyone up for a “cornstarch chugging contest” that I can record and post on GSDlife or Starchwars?