Who are the parents of a child with CMT?

We have an ever growing number of parents of children with CMT joining the group. Please let us know who you are and what your Doctor has suggested to help you care for them, and make their life as normal as you can. I hope I phrased that correctly!

My youngest daughter was diagnosed about 3 yrs after I had confirmed diagnosis; Age 5 or 6 yrs; She was a toe walker and had balance issues. Suspected so got referral to MDA for DNA testing. Our son also was tested 2 times but inconclusive both times; He shoes some mild symptoms and so far is very strong, good balance and eats great healthy diet. I have a granddaughter who shows possible symptoms now and had difficulty getting through a work day and yet like I did, pushed myself and expected more from myself. I keep her warned not to over do things and take breaks often.

Hi CM,

They are very fortunate to have your wisdom and experience to guide them. Hopefully they listen better than mine when you try to tell them about genetic disease. I get the 'eye roll'!

I don't discuss it much with our son, he feels he does not have it, but does recognized he is predisposed to it and his off spring will be as well. He did wear inserts in his shoes b/c he had his ankles roll in and Shiner's provided any orthopedics they needed.

The main thing is he is aware so that if he does start having issues he will have a starting place and he's seen how to manage some of the problems. My daughter has to address hers daily, b/c her job is physically taxing. Our granddaughter listens intently, as her mother, our oldest daughter, doesn't listen to her pain and complaints, she tells her she is a hypochondriac. But, at 5 yrs old, Elora, my granddaughter had to have open heart surgery b/c her heart was enlarged and tried to burst. She kept telling her mom, how tired she was when she tried to make her walk the mall and wouldn't listen just thinking she was "lazy". I've been there, so I let her share her pain. I was 40 before I knew what was causing my difficulties, so once armed with knowledge, people perceive Im better now, but it is a matter of managing it better.

Thanks for your reply, CM, I'm so sorry for what this disease has done to your family. I don't think a child should EVER have an illness. They should be able to be happy and totally free of suffering.

I was not trying to call anyone out or cause bad feelings by posting this, I was just trying to get our parents of children with CMT to meet. It always helps to talk to others in the same place.

I have no hard feelings towards anyone on the issue; we all deal with our feelings, grief and pain in different ways; My oldest daughter is having difficulty accepting that her daughter might be affected, and equally hard for her to accept her mother has health issues; in her young years she saw me as very strong and nothing I couldn't do, in her eyes. I get that! I had a difficult time embracing it as well, but learned I dealt with things so much better if I accepted it and moved on to deal with the issues rather than my depression or my resentments to having it. Now I actually can appreciate what CMT has done for me, which is given me strong character. All through my young years and teenage growing up I had difficulty to overcome and it has given me strength in spirit and character to have the Adversary!