Duchenne you have taken so much from me, my only brother, the opportunity for me to know my uncles and the opportunity for my boys to know theirs, maybe some of my hopes for the future but I assure you Duchenne my boy will never be yours.
You may waste his little muscles so that even getting off the floor is a chore, but I will have taught him the value of perseverance so that he will try and try and when he is no longer able he will not question his own resolve and you will not win.
You may stop him walking, running, swimming, all the things he loves, but I will have taught him the art of adaptability so that you Dear Duchenne will not win.
You may stop his little arms from hugging me but you cannot stop me from wrapping his arms around my neck and squeezing him so he knows that even if he can’t hug me I will never stop hugging him and he will always know that he is loved, and you will not win
You may take his ability to be active in a way that only teenage boys can, but I will have taught him values that he will seek in others who will become his friends so that he will always have a friend who will stay with him, he will have friends who adapt their plans to include him, he will never be alone and you will not win.
You may fill his life with the monotony of hospital and therapy appointments but I will fill the rest of his time with enjoyment and love so that these things you put him through will just be minor blips in an otherwise perfectly happy life and you will not win.
You may take his ability to move freely, but I will have taught him determination in spite of his challenges and together we will find ways for him to maintain his independence so that you will not win.
You may make it difficult for him to breathe and quash his tiny lungs but I will manage his care with such love that such things will not impact immensely on his quality of life and you will not win.
And even when you take his last breath and stop his heart from beating you still will not win. You see, he and I are connected by the soul and you can never touch his soul. It is pure and perfect and beautiful. And while I may despise you for the hurt that you have caused, I will teach my son to love you because you are a part of him and he is indeed pure and perfect and beautiful.
Duchenne, I know that you will be relentless in your fight and you will one day take him from me, but just know that I will fill his life with love, his heart with determination and his soul with such compassion that even though you may slowly take his body, my boy will never be yours.