PPMD Community

Hello

Hello everyone! I am excited to join you all in the PPMD community. Forgive me if I'm not writing this in the correct area. I'm new and learning. Our son, Beck was diagnosed with DMD in January. It did come back as genetic HOWEVER we have never had a family member diagnosed with any type of MD so needless to say, the news was very shocking! I am ready to fight for our boys and ready to find a cure! I just wanted to thank you all for accepting me into such a wonderful group!

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Permalink Reply by Jay Griffin on March 10, 2016 at 6:01pm

Brandi, we were recently diagnosed as well. Glad that you reached out to this group. If you need to talk, I am here. It helps me daily

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Permalink Reply by Limca Jhaveri on March 14, 2016 at 10:44pm

Hi Brandi,

My son Jaylen was 3.5 years old in August 2015 when he was diagnosed. Its tough getting the diagnosis, but we are trying to learn as much as possible about it. I am also not a carrier of the disease and no one in our family has ever had this. Will you be coming to the PPMD conference in June. We are planning on going and would love to meet you. Reach out if you need to talk. I am also trying to think of ideas of how to raise awareness of DMD similar to the ice bucket challenge for ALS.

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Permalink Reply by Nida Zuberi on April 16, 2016 at 12:40am

Hi Brandy,
My 5 year old son was just diagnosed this Thursday. I'm in shock! Never heard of it, none in my family have it. Pretty much lost right now. Just stayed up all night and researched. Really tired. Can't believe it.