Sorry,
I don't mean to sound clinically depressed but none of this is funny. "sounds like he'll fit in the community just fine." Don't you think I want to dance with my son at his wedding? He will be robbed of one of the many beautiful things that life has to offer and this includes growing up to be a tall handsome man( srteroids stunt the growth), meeting the girl of his dreans and marrying her one day and producing children. "Be thankful your son could walk for the first decade of his life?" Hey, I better break out the whistles, blowers, and horns now. Yeehah! And, just because he is walking doesn't mean it isn't a struggle for him. And, he takes 12.5 mg of prednisone a day. This is a whopping adult size dose. Needless to say, the mood swings and hunger pangs he receives from taking a steroid are enough to drive a parent up the wall. But, I'll take it over witnessing him falling all of the time, struggling with climbing and the inability to jump off the ground.
Good luck to you and your health.
I have read some of these comments on this website and truthfully, I find them upsetting.
You see, my 6 year old son has a diagnosis of Duchenne muscular dystrophy. Do you know what he has to look forward to in his future? Let me just tell you about some of the few.
He gets to have a one on one aid in school because he won't have the strength to toilet and wipe himself.
He probably will never have a relationship with a woman much less marry one and have children.
He will end up needing someone to dress and feed him because he will not be able to do these things for himself. Did I tell you he stops walking typically by the age 10?
Let's hope a fly doesn't land on his nose or he will ask you to swat it away for him. He won't have the arm strength to do it for himself.
Oh, he'll probably wake up about 10 times every night because he won't be able to turn and reposition himself and he will need someone to do this for him.
Uhhm... He will need the assistance of a respirator to help him breath and clear his airways so that pneumonia doesn't take his life quicker than when it comes knocking on his door before the age of 20. And, there is a good chance he won't be able to eat becasue he won't have the muscle control to handle this so he'll end up with a feeding tube.
I could go on and on but I think the comedians on the post get my point. This is DUCHENNE MUSCUALR DYSTROPHY. Affects boys only and is a very progressive disease.
My point also is...the parents that have a child with DMD pray everyday for a cure, the promising research such as myostatin to help our boys keep us getting out of bed everyday. Yes, this is not a silver bullet by any means. But, we are desperate parents fighting an incurable disease that is horribly underfunded ( don't even get me on that rampage) and we are desperate for anything that might help our sons walk perhaps to the age of 11 instead of 10. This is what my son has to look forward to now. A wheel chair by the age of 10.
If every little bit of good news added up for these boys, a cocktail of treatments so to speak then perhaps they could live a somewhat normal functioning life. This is the best case scenerio.
http://www.caringbridge.org/visit/markcarson
Tina ( Mark's mom)
Slashdot Mirror
Sorry, I don't mean to sound clinically depressed but none of this is funny. "sounds like he'll fit in the community just fine." Don't you think I want to dance with my son at his wedding? He will be robbed of one of the many beautiful things that life has to offer and this includes growing up to be a tall handsome man( srteroids stunt the growth), meeting the girl of his dreans and marrying her one day and producing children. "Be thankful your son could walk for the first decade of his life?" Hey, I better break out the whistles, blowers, and horns now. Yeehah! And, just because he is walking doesn't mean it isn't a struggle for him. And, he takes 12.5 mg of prednisone a day. This is a whopping adult size dose. Needless to say, the mood swings and hunger pangs he receives from taking a steroid are enough to drive a parent up the wall. But, I'll take it over witnessing him falling all of the time, struggling with climbing and the inability to jump off the ground. Good luck to you and your health.
Birthdays have a whole new meaning. Truthfully, these are kind of sad days for us. It is just another year closer to becoming whellchair bound.
I have read some of these comments on this website and truthfully, I find them upsetting. You see, my 6 year old son has a diagnosis of Duchenne muscular dystrophy. Do you know what he has to look forward to in his future? Let me just tell you about some of the few. He gets to have a one on one aid in school because he won't have the strength to toilet and wipe himself. He probably will never have a relationship with a woman much less marry one and have children. He will end up needing someone to dress and feed him because he will not be able to do these things for himself. Did I tell you he stops walking typically by the age 10? Let's hope a fly doesn't land on his nose or he will ask you to swat it away for him. He won't have the arm strength to do it for himself. Oh, he'll probably wake up about 10 times every night because he won't be able to turn and reposition himself and he will need someone to do this for him. Uhhm... He will need the assistance of a respirator to help him breath and clear his airways so that pneumonia doesn't take his life quicker than when it comes knocking on his door before the age of 20. And, there is a good chance he won't be able to eat becasue he won't have the muscle control to handle this so he'll end up with a feeding tube. I could go on and on but I think the comedians on the post get my point. This is DUCHENNE MUSCUALR DYSTROPHY. Affects boys only and is a very progressive disease. My point also is...the parents that have a child with DMD pray everyday for a cure, the promising research such as myostatin to help our boys keep us getting out of bed everyday. Yes, this is not a silver bullet by any means. But, we are desperate parents fighting an incurable disease that is horribly underfunded ( don't even get me on that rampage) and we are desperate for anything that might help our sons walk perhaps to the age of 11 instead of 10. This is what my son has to look forward to now. A wheel chair by the age of 10. If every little bit of good news added up for these boys, a cocktail of treatments so to speak then perhaps they could live a somewhat normal functioning life. This is the best case scenerio. http://www.caringbridge.org/visit/markcarson Tina ( Mark's mom)