Was not September 1st just like yesterday and here there is only one week left. September is Duchenne Action Month and September 7th is always Worldwide Duchene Awareness Day. I am sure many of you are thinking whew, you did not have to see my daily posts this month doing my part advocating for and educating about #Duchenne.
Duchenne muscular dystrophy may be a rare disease but it is the most common fatal genetic disorder diagnosed in childhood. And let’s see, I have only actually met a handful of families in person who also have a child with Duchenne. This neuromuscular disease can show up in any family any where around the world at any time. I have no family history yet happened to be found a carrier after my son’s diagnosis. And two of my three daughters who have been tested as carriers too. How incredibly crazy it is that of the 50/50 change of any of my children inheriting my defective dmd gene three out of four have and the fouth is still unknown. The scary thing is my daughters and I are manifesting carriers, having symptoms which inhibit our daily lives.