My son, Corky Daniel, is ten years old. Up until he was five, he enjoyed good health. Then he started losing strength and the ability to walk until he needed crutches (and eventually a wheelchair) to get around. The diagnosis: Duchenne muscular dystrophy, which mainly strikes boys ... and is fatal.
Most people who have Duchenne's don't live past their twenties (or thirties if they are extremely lucky).
Before he got the muscular dystrophy, Corky was very popular: he did well in school, and he had tons of friends. As he lost his ability to walk or get around, then his friends disappeared; now he has none. Because his health has gotten so precarious now (the MD is starting to affect his heart/breathing; he has to use oxygen at night when he goes to bed), he has to be schooled at home; he is just too weak to attend school on his own.
I am his teacher. I have to be near Corky at all times in case anything should happen to him.
Well, anyway, back to my story.
Corky has been very depressed lately. He feels so alone; it's like he wants to give up on life. He isn't eating nearly as well as he should, and nothing interests him anymore. I know what it is: it's the lack of friends. I feel so bad for him; I wish there was more that I could do for him to make him happy.
Well, I decided to share his story on the Internet (with his permission of course; he gave me the okay), and I also included our home address. I want Corky to know that there are people out there who care for him and his problems; this is why I did this. I want people to drop him a line or to send him cards, so he doesn't feel so alone.
The first cards started arriving the other day. We'll see how far this goes.
I just wish that people understood what Corky goes through on a day to day basis. He has to have people come in and dress him or to stretch his musccles. At night, he requires oxygen because as I said earlier, his heart and breathing are starting to become affected by the progression of his disease. I wish we could stop it, but unfortunately we can't. All we can do is hope for the best and/or pray for him, or pray that a miracle cure is available soon so our son doesn't have to die in a few years to this horrible disease!
If people could lift up Corky's sagging spirit, that would mean the world to him and to myself. He is only a little boy; he doesn't deserve to be alone or suffering needlessly! I hate his having MD; I feel like I'm responsible; I am the one who carried the defective gene, and I have already lost one son (Nathan) to MD 11 years ago, right before I had Corky; he was 10 like Corky when he passed away (pneumonia and heart failure). Now I am having to face this same nightmare all over again, and it's getting harder and harder to cope!
~To be continued.~