My husband and I were blessed with our amazing son Max who is now 9 years old. Our fighter had a rough beginning when he entered this world and fights every day. In September of 2011, Max was diagnosed with Prader-Willi Syndrome. After meeting with doctors and doing research we are still learning every day. To learn more about Prader-Willi please visit www.fpwr.org. Follow our blog and keep up with our family and Max's progress!
LA 2017!
LA 2017!
Thursday, June 13, 2013
One Small Step for Prader-Willi Syndrome
So, last year after Steve and I went to our first Prader-Willi Conference, and learned so much and met some really amazing parents, I decided that I needed to be part of the movement to find a cure. I would not just sit back and hope someone else does the work and it happens for Max in his lifetime. A couple from Canada, Tanya and Keegan Johnson started the One Small Step for Prader-Willi Syndrome when they decided they wanted to find a cure, about 10 years ago. It started with one walk and now it is almost at 100 walks around the world. Parents are joining together one walk at a time to raise money for research that is desperately needed. This year, along with another mom, Katy, we are hosting the 1st Annual One Small Step for Prader-Willi Syndrome! I am a bit nervous, but am hopeful it is a great day and that all goes smoothly! And that we have good weather! So...wish me luck and I will post again after the walk!
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