Please Help - 5 yo Son Diagnosed - We are just overwhelped and broken hearted

Is there any support phone number?  Or are there any parents who could have a conference call with us to just help us emotionally and talk to us.

Little Billy's Loving Dadda Chris

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Hello Chris,

Sorry to read about your son's diagnosis. You have taken a very important step in gaining support by joining PPMD. This is a wonderful group of people "who get it" and always ready to provide guidance. We were diagnosed when our son Krishna was 6 and totally understand the emotions. Just take one day at a time and slowly everything will fall in place. It just takes some adjusting to the "new normal" for the family. Take faith in the fact that your son is born at a time when there are lot of exciting therapies coming to trials for our boys. A cure for duchenne is near. Best wishes to you and little Billy

Thank you so much. I hope for Krishna, Billy and other sufferers there is something hitting the market. The disease progresses so fast and the FDA approval and new medicines come so slowly. Thank you for your kindness.

Hi Chris

i am so sorry to know about your son, and know that there is another family suffering like us after diagnosing thier son with this horrible disease,

till now I and my husband can not accept the idea of that our sun has this disease it si almost 6 month since we've been told but still too hard to talk about it or even think about!!!

it is only a few days since i started looking up for any drug, researchs, treatment, hope!! i am trying to stop crying and do something good for my son, it is toooooo hard but i have no any other options, let me tell you something, think that at least you are in a country that might get support or places that you can take your son to, for me even that simple thing is not available,been here in this community helps alot i am glad that i joined this group.

take care & God bless your son.

Chris,

I work for PPMD. We are here for you. I can definitely provide you with some guidance.  Send an email to ryan@parentprojectmd.org and we can set up a time to connect on the phone. 

Ryan Fischer 

PPMD

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