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  • Alex Clarke

Our New Duchenne Family

Following diagnosis, both my wife and I dealt with the news in our own way. There was one thing we had in common, it's a grieving process. At the time it is perceived as a loss, all the hopes, dreams and aspirations you have as a father for your son are blown away - gone!


The news from Google was that Ben would not live much past his 12th birthday, he would be wheelchair bound and would be incapable of doing much. This outlook changed slowly over time, but it was the introduction to our new, Duchenne Family that helped me most. I have to say, attending a Duchenne Conference only 2 months after diagnosis may not have seemed wise but in hindsight, it was the right thing to do.


Being surrounded by mothers and fathers in exactly the same boat as you. You only had to make eye contact and there was an affirmation that we all had that one day in common, the day our lives changed, Diagnosis Day (D-Day).


The people I met, the professionals who advised and the support network created not only placed me in a more positive frame of mind, the bond created is one of friends for life. We may have met through the worst of circumstances, but together we get through and support and help each other. Our new Duchenne Family, not out of choice but a very special bunch.



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