It seems there are only 3 families in the immediate area connected into the PPMD Community. My 6 year old Ayden was diagnosed just last month. Still having a really hard time focusing on today. I would like to get involved locally to help build awareness and funding to further research. I really feel lost right now. Any suggestions or advice to get me headed in the right direction?
I've also connected with Debbie Dupree locally; do you all know each other? Coincidentally she is a friend of a co-worker of mine. We haven't met yet but she went to the Connect Conference and should have tons to share.
I am happy to report that my dream of a neighborhood family-friendly website that I shared with you and Abbie in February is close to becoming realty. I want to also use it to also spread the word about Duchenne so any suggestions that you have would be welcomed. Go too http://dev.neighbuzz.com where you can either create your own login or use my test login to see the site in its final stages of development.
Test login is firstname.lastname@example.org and the password is 123456.
Now changing the subject to my son Garrett, he now uses a power chair and we'd like him to another Duchenne boy close to his age also using a power chair. After talking with the Houston MDA I was shocked to learn that he is the only one in all of Houston that stopped walking at the age of 8. The next youngest age to him is a boy in Houston who stopped walking at age 10 and now he is 13 years old.
If you know of a child ANYWHERE in Texas or maybe Louisiana close to his age in a power chair then please let me and/or them know because Garrett needs to know that he isn’t the only 8 year-old boy using a power chair and we’re willing to travel and meet such a boy and his family.
Thanks so much for all you do and together WE WILL CURE DUCHENNE!
I met you and your family at the Pasta Dinner for the Run For our Sons at Disneyland at Naples. We were just getting involved in PPMD and we discussed getting more people together here on the West Coast. Anyway, I requested you add me as a friend so I just wanted to make sure you remembered who I am. Please let me know how we can help make PPMD more of a common form over here on the West Coast.
Welcome to this wonderful community website. This is an awesome place and the people on here have given me advice and opinions and helped me get through some pretty dark days since my 4 year old son was diagnosed in 2006.
How is your son Sam doing? How old was he when DMD officially became part of your life? And more importantly, how are you and your wife doing since the diagnosis? My husband and I still cry a lot, but we're getting there by putting all our efforts into fundraising.
Anyway, I hope to get to know you and your family better over the course of time.