Andrew has Duchenne Muscular Dystrophy. It's the diagnosis we've been dreading. There is no easy, no sugary way to explain the disease other than to just be blunt about it. So here goes - My sweet baby boy has an incurable terminal disease.
Duchenne Muscular Dystrophy (DMD) is a rapidly progressing degenerative nueromuscular disease. It begins in the hips/pelvis, upper arms, and upper legs eventually spreading out to all the skeletal muscles in the body. There is currently no cure.
DMD is usually inherited from the mother but I don't have any family history of it, that I know of. Andrew may be one of the rare little boys who are born with disease due to a random mutation in his genes where the protein dystrophen is supposed to be made. Andrew instead produces no dystrophen. What this means is that his body cannot hold on to his muscles and as the disease sets in, his muscles will waste away and he will lose all motor function. The muscle that remains will pull back away from his joints and cause painful contractures. This is a disease that comes with years of suffering. Most of the time, a little boy doesn't exhibit symptoms until he is around 4 so in a way, we are lucky ~ we have more time than most parents to prepare for the changes and challenges that DMD will bring. We know that we have to stay vigilant with his PT to get him up and walking so that he can hang on to his mobility for as long as he possibly can. Little is fighting SO hard to learn to crawl and walk but all of his progress will one day be taken back away from him - most DMD boys are in a wheelchair by the age of 12.
This disease spreads to the heart and respiratory system causing heart failure and the need for an eventual trach/ventilator to help with breathing Like all other DMD boys, the day will come that Andrew succumbs to it's complications. Yes, this disease will kill him. Most DMD victims die before their 25th birthday due to respiratory or heart failure.
As of right now, today - Andrew is the same happy little angel that he was 10 minutes before the phone call. He'll still be this way tomorrow, and the day after. In fact, he pushed himself up to standing today using his step stool and the side of the couch! This isn't an overnight tragedy for us all, we do have time. We cannot let this diagnosis ruin what Andrew has going right now. As for today, all that has changed is a medical record. I am not saying that we are not devastated. I am not telling you not be devastated. Grieving is a part of facing this new life - I spent half of the night we got the call crying and the other half laughing. It will be a very hard journey for the 25 or so years filled with ups and downs, joys and heartbreak. And bare with me as I will have posts on here that are sad, angry, and lost from time to time. But I will also have posts praising God for the little boy He chose to give me and posts of joy over Andrew's ..........oh, everything!
We ask all of you for your continued prayers. And maybe one day, those research scientists at the Washington Center for Muscle Biology will find a cure or gene therapy (AHEM, Uncle Danny.....) in Andrew's lifetime and he'll get to be an 87 yr old man someday. Unfortunately at this time, they don't have "anything good for anything other than a sick rat" according to my uncle. But for right now, I'm going to say a prayer of thanks bc, as his Attending during our stay at VCH 3 weeks ago said' "He's here now - and he's happy".