I have a rare missing enzyme disorder called Muccopolysaccharidosis (MPS) Morquio’s Syndrome that makes me about 3’2". For more information about my life with this disease and a few other helpful sites related to it, click here. In the past it was hard to find others that had or were familiar with this particular disease but the internet is helping to close that gap. Recently 8 of us were able to meet together in Portland, Oregon and we hope to make this a yearly tradition traveling to various parts of the United States. This summer we hope to be in Minneapolis, Minnesota around the 4th of July. Feel free to send me an e-mail if you would like more information. As a result of that meeting I have formed a listserve to help us keep track of each other and stay in touch as well as answer questions any of us or new friends might have.
I have the privilege of knowing Joni Eareckson Tada and working with the disability outreach she began called Joni and Friends. Currently I am the Washington/Pacific Northwest Representative for the program Wheels for the World. Basically what we do is collect, refurbish, and then distribute the refurbished wheelchairs to developing countries where these chairs are desperately needed but not available. Unfortunately we are not allowed to distribute wheelchairs in this country because of liability, though if you need a chair I might be able to help you find a way to get one through another organization. To learn more about the Wheels program, my involvement with it, link to Joni and Friends, and a few other places on the net that deal with disability isssues click here.
Because of the chronic nature of my disability I have had to look long and hard at alternative medicine. In late 1996 I found a nutritional supplement program called USANA and it changed my life. To read about what it did for me and how you can try it too, click here.