Guest guest Posted May 12, 2000 Report Share Posted May 12, 2000 I do not know the pain of a child with CMT. I do know that CMT is mild to other diseases your child can be diagnosed with. MDA has over 40 neuromuscular diseases.Duchenes will claim a young man before he is 20. At least your child will have loving parents and family. Look at the other diseases out and think about it. bhmont@... wrote: In a message dated 5/12/00 3:08:46 PM Central Daylight Time, ann9055@... writes: << it breaks my heart everyday to see him struggle... >> Hi Tana-- Bud here-- There is no way I can express the grief that a parent has when we find out that our children have CMT. We do what we can, hope a lot and pray that it won't happen, I'm sure manytimes we cry in the night. I keep hoping that we will be the last generation to be afflicted and there will be perhaps some way to at least slow the progress of the disease, if not cure it entirely. I had an aunt who had no visible symptoms at all, but now her great granddaughter, age 7, has been diagnosed with it. Most of our affected people show symptoms as late as the middle '40s, but as for me, it was becoming evident when I was about 8, in my feet. The arches became so high that in HS, I wore " tennis shoes " made from rubber & cloth. I was able to find a clinic whose doctors diagnosed " it, " but in the 1940s nothing was known as to different types. By now I'm in my 70s and retired from teaching and so I don't have to go out and slay a dragon everyday. My balance & my hands would not allow that now. There are many worthwhile things to life even with CMT, so try not to be discouraged. Bless you & your son, CMTer Bud in TX --------------------------------- border= " 0 " alt= " " src= " http://adimg.egroups.com/img/3964/10/_/616793/_/958164864/ " > --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2000 Report Share Posted May 12, 2000 I do not know the pain of a child with CMT. I do know that CMT is mild to other diseases your child can be diagnosed with. MDA has over 40 neuromuscular diseases.Duchenes will claim a young man before he is 20. At least your child will have loving parents and family. Look at the other diseases out and think about it. bhmont@... wrote: In a message dated 5/12/00 3:08:46 PM Central Daylight Time, ann9055@... writes: << it breaks my heart everyday to see him struggle... >> Hi Tana-- Bud here-- There is no way I can express the grief that a parent has when we find out that our children have CMT. We do what we can, hope a lot and pray that it won't happen, I'm sure manytimes we cry in the night. I keep hoping that we will be the last generation to be afflicted and there will be perhaps some way to at least slow the progress of the disease, if not cure it entirely. I had an aunt who had no visible symptoms at all, but now her great granddaughter, age 7, has been diagnosed with it. Most of our affected people show symptoms as late as the middle '40s, but as for me, it was becoming evident when I was about 8, in my feet. The arches became so high that in HS, I wore " tennis shoes " made from rubber & cloth. I was able to find a clinic whose doctors diagnosed " it, " but in the 1940s nothing was known as to different types. By now I'm in my 70s and retired from teaching and so I don't have to go out and slay a dragon everyday. My balance & my hands would not allow that now. There are many worthwhile things to life even with CMT, so try not to be discouraged. Bless you & your son, CMTer Bud in TX --------------------------------- border= " 0 " alt= " " src= " http://adimg.egroups.com/img/3964/10/_/616793/_/958164864/ " > --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2000 Report Share Posted May 12, 2000 I do not know the pain of a child with CMT. I do know that CMT is mild to other diseases your child can be diagnosed with. MDA has over 40 neuromuscular diseases.Duchenes will claim a young man before he is 20. At least your child will have loving parents and family. Look at the other diseases out and think about it. bhmont@... wrote: In a message dated 5/12/00 3:08:46 PM Central Daylight Time, ann9055@... writes: << it breaks my heart everyday to see him struggle... >> Hi Tana-- Bud here-- There is no way I can express the grief that a parent has when we find out that our children have CMT. We do what we can, hope a lot and pray that it won't happen, I'm sure manytimes we cry in the night. I keep hoping that we will be the last generation to be afflicted and there will be perhaps some way to at least slow the progress of the disease, if not cure it entirely. I had an aunt who had no visible symptoms at all, but now her great granddaughter, age 7, has been diagnosed with it. Most of our affected people show symptoms as late as the middle '40s, but as for me, it was becoming evident when I was about 8, in my feet. The arches became so high that in HS, I wore " tennis shoes " made from rubber & cloth. I was able to find a clinic whose doctors diagnosed " it, " but in the 1940s nothing was known as to different types. By now I'm in my 70s and retired from teaching and so I don't have to go out and slay a dragon everyday. My balance & my hands would not allow that now. There are many worthwhile things to life even with CMT, so try not to be discouraged. Bless you & your son, CMTer Bud in TX --------------------------------- border= " 0 " alt= " " src= " http://adimg.egroups.com/img/3964/10/_/616793/_/958164864/ " > --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2000 Report Share Posted May 12, 2000 Hi Tana a from Oregon here. I have a 13 yo daughter who has been diagnosed with CMT since she was 8. It took us parents a year or so to figure out " something " was wrong and get her help. I, too, believe like others who have responded that she was blessed to not have Duchenne MD or a killer. That is not to say it is not hard, it is. I wept for her losses and still do when something becomes difficult for her. But, my husband and I are grateful she is alive. She has developed a backbone and an unbelievable patience for people. She wants to be a psychologist and help others less " fortunate " than her. Pretty amazing that she thinks of others in her situation. We struggle with clothes, shoes, you name it. BUT, she is alive and I thank my creator for that. I thank God for her and all she has brought to our lives. Yes, we get sad and it does break our hearts. You know, we also have a 17 yo without CMT and his struggles break our heart too, just in a different way. So hang in there and listen to all the wonderful people that are willing to share their lives, struggles and wisdom with us parents. I have met some great people through this service. a Quote Link to comment Share on other sites More sharing options...
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