I am the grandmother of two cherished boys with Duchenne who were diagnosed in the summer of 2008. I live in Pennsylvania but am originally from Syracuse, New York. I teach photography. Photoshop and online history. My true calling is photo-journalism. Everyone needs to share their story of Duchenne -- if you need help doing this (creating a flyer or care for others to see) please let me know. You can also find me on Facebook.
About my family:
I have two daughters and five grandchildren. One daughter's only two children have Duchenne. They are Jake (11) and Ryan (8). They were diagnosed 7 years ago. I am so fortunate to live within 15 minutes of them so I know them well. Until I had grandchildren, I never knew I could love that much. Duchenne makes you try to balance of severe heartbreak and joy. We have to tell others our stories because many (most) do not even know Duchenne exists.
Name(s) of child(ren)/individual(s) with Duchenne:
Jake and Ryan
Age(s) of child(ren)/individual(s) with Duchenne:
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Hi it's David, I don't know if you remember but I was the person who messenged you. I said that I was looking for others who had Duchenne that I could spend time with. I am an only child and I was looking for some friends. It sounds like you would be the perfect person meet. I am 23 three years old and I Duchenne muscular dystrophy. I live in Berks county and Pottstown is kind of a hike for me. It's about forty five minutes away from me. But I still would like to stay in contact with you. If you would like I can give you my email address and we can see if we want to meet at some point. Just let me know. Have a good rest of the day and God bless.