|
BIOGRAPHY
Mitchell was born in Penrith NSW, a healthy, bouncing 8lb 2oz. He had respiratory difficulties and was admitted to NICU, but the doctors put it down to a prolonged second stage labour. He wasn't a wriggly baby, and he certainly didn't roll or crawl, but as he was our first, we didn't know that this was abnormal. When he was three it began to become obvious that he wasn't the same as other kids his age, but nothing could prepare us for the diagnosis of Duchenne Muscular Dystrophy two and a half years later.
I have heard many people say that their worlds come crashing down at that point. Ours didn't coming crashing down, but I did feel like we were caught in the eye of a storm at that point. And like being caught in the eye of a storm, our world was eerily quiet. The phone didn't ring as no-one knew what to say, and anyone who did ask about this condition was confronted with a blank look, as we had no idea how to spell Duchenne, let alone explain to them what it was. It really was like sitting in a house with the windows boarded up, knowing that the storm was about to come over again, but having no idea of the damage it would do, or how long it would last. We didn't know what to do, or what we needed - we were facing the storm of the century, and all we had was a candle.
The first Christmas was hard, cards came in all full of joy and salutations. Friends were having babies, going on holidays, or their children were excelling at school. We sent no cards that year, as I didn't see how on earth I could put a letter in explaining what was going on in our lives, and still be able to put Merry Christmas at the bottom. It didn't seem right, so it didn't get done. By the time he was 7, Mitchell lost the use of his legs, and his arms became too weak to move at 9. It is very hard to watch Duchenne take over your child’s body and render it useless, especially when there is no cure, and in Mitchell’s case, no effective treatments either. Mitchell has just turned 10, and is doing well at school. He has heaps of friends that see past the wheelchair and like him for who he is. He's remarkably happy, and I guess at the end of the day, that is what every mother hopes for, whether their children have Duchenne or not.
We still feel scared, as we are still surrounded by the unknown, but we just deal with the problems as they arise, and try not to stress over things that are beyond our control. We know Duchenne will take our son eventually, (it not only destroys skeletal muscle, but also the heart and diaphragm) but we are determined to make each day we have with Mitchell a positive one.
Written by Mitchell’s Mum.
|
