My name is Donna Schneider and I am married to a great man named Mike for 8 years now. I am a carrier of Duchenne and the only one in my entire family.
About my family:
We have three children-Ian is 6, Ava is 3, and Mia is 1. Our Ian has DMD and we found out when he was 2 and we were expecting our second child. We live in Phillipsburg, NJ and have live here for 6 years.
Name(s) of child(ren)/individual(s) with Duchenne:
Hi Donna - Lovely photos! I saw your article in Cure Duchenne. At first glance, I thought it was my son in the pic with his Scout uniform on! I also thought I was reading my own words. Just wanted to drop a line to thank you for sharing your experience--it was a nice reminder that we are not alone. Have a Merry XMAS and blessed New Year, Susan Forney
Joshua is in Grade 2 and I am looking to do a presentation as well. What was suggested a while ago was to have the children in the class wear fire fighter's boots. They can then understand how it feels to walk, run, jump and climb with the boots on and can understand how our boys feel everyday. The next focus is to learn the word empathy; what it truly means. I thought I would share this hoping it would help. The reason for my finding you with this question was facebook.
Welcome to PPMD. I am also a carrier, but have passed the gene to both of my boys. You will find a wealth of support here. Take care of that beautiful family of yours momma, and keep faith that we will find a cure for our baby boys.