It was great to see you again at conference and visit some. I thought it was a positive experience. I learned several new things and enjoyed meeting the doctors, researchers and other families. I think we have a great opportunity to get involved in the advocacy program especially with Ryan setting up meetings for us in our own hometowns. Keep me posted when your new grandbaby arrives.
Peggy. I am new to this site, but not new to DMD. My two grandsons were diagnosed 7 years ago. there isn't a day that goes by that i don"t cry ...but I have learned to focus on their abilities as opposed to their disabilities. I have learned to live in the moment, and to provide them with every opportunity that i can. they are really happy little boys. when friends ask how they are, it is such a loaded question... so relative. It would be so easy to sink into a depression as you look at the future, but there are wonderful research things happening...and our boys need us to provide the best life that we can for them. As hard as it is sometimes, we absolutely need to be as positive as we can be for them. Do you have any local support systems? I think that we all feel so isolated. This website is wonderful, but contact with real people is crucial. let me know if i can help.
Hi Peggy! I saw that you are Jessica's mom. We live in Labadieville, LA which is close to Houma and Thibodaux. My son Riley will be six in October and we were diagnosed in January of this year. My mother is also on this site, she hasn't been on much since they still do not have internet since Hurricane Gustav. Jessica and I (and other parents from LA) have been trying to plan a get together, but the storm seemed to have messed it up for a while. I hope we can all get together soon...I'd love to meet you all!