Today is World Duchenne Awareness Day. The son of some very dear friends is currently battling this heartbreaking disease. I would like to share with you his fathers post from today: Duchenne Muscular Dystrophy is a word I heard for the first time 6 years and 6 months ago in the office of Dr John Sladky a neurologist at Emory Childrens Clinic on Good Friday. A DNA test would get us the final diagnosis of DMD on September 4, 2008. I wasnt at all prepared for what Google had to say about DMD, and after 6 years I have learned that as horrible as the Google results were, they still didnt prepare us for the road ahead. I tend to use Facebook as a journal of sorts, a dumping ground for thoughts or feelings I need to get out of my head. That said I know some of you have a small idea of how DMD changes lives, but I would like to further enlighten you. Im feeling overwhelmed already by life in general, and more specifically the changes we are seeing in Brandon lately. That said, in order that I dont have to compose paragraphs in an orderly fashion Im going to list some relevant facts, some personal some DMD specific. -DMD effects 1 in 3500 male births worldwide. -It effects every muscle in the body, the heart is a muscle and muscles make us breath. -Girls can but very rarely get DMD. -Brandon has restrictive lung disease. That means his lungs are healthy but the muscles that work them are weakening. He has a cough assist machine because if he gets a cold he is to weak to have a productive cough on his own. -DMD is one hundred percent fatal. -Brandon is probably upper middle aged. -Parents of a child with DMD have an eighty six percent divorce rate. -As Brandons parents we havent slept through the night in years because he is to weak to roll himself over in bed. -I just learned this one myself, DMD is basically ALS that happens in childhood. -It is often hard to answer the question How are you guys because there is usually a long sad answer involved. The list could go on and on but if any of you have questions, feel free to ask. I didnt put this together to make anybody sad although it will. I put it together so people have a glimpse into the day to day life of a family dealing as best we can with DMD. Please take some time today and remember this sweet family. And if you would like to do more, a benefit account has been set up at United Community Bank to help this family purchase a newer and bigger van to accommodate Brandons complex needs. To contribute, please make a check out to The Brandon Smith Van Fund, and send to: The Brandon Smith Van Fund C/O United Community Bank PO BOX 398 Blairsville, GA 30512 I have seen so many of my friends take the ALS ice bucket challenge .....so how about this: I challenge every single one of my friends to support the Smith family --whether it be through donations or prayers. Just do it. Lets show some support for this incredible family. Union County: lets take care of our own.
Posted on: Sun, 07 Sep 2014 05:39:06 +0000
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