telling children about CMT

[Guest guest]

Hi Tommy,

As a parent of two CMTers I believe they should know and then give them the

choices and the consequences of what could possibly happen if they went skiing

or what would happen if they did not. No matter if they choose sports or not

they should be able to make the choice.

Thanks

Heidi

[Guest guest]

Tommy-

I can't tell you how many times I got hurt in gym class growing up. Playing

in the neighborhood I had some troubles too. If I'd known then that I had CMT

I still would've done all I did. My daughter was a FAST track runner,played

the flute and was a cheerleader. My son played the trumpet and baseball.And he

was deaf.They always knew CMT was a BIG possibility. Oh I even took tap and

ballet classes. And I was a darn good baton twirler too.

I didn't know about my CMT until I was 18. My children were tested around

the age of 14-15. That's when the symptoms were showing.They were so happy to

have done the things they did.

And of course they also had to plan their futures with CMT in it.My daughter

has her Masters in Social Work and she has a 7 month old baby boy. My son

very sadly took his life almost 3 yrs.ago. He couldn't deal with his CMt and

what was happening to him.

Barb

GEEZ, alls I said was let kids be kids.

[Guest guest]

Barb,

I played sports and was very active when I was young and my father didn't know

he had CMT till he was 58 and I have a sister who has it but she was clumsy as a

kid.

My symptoms didn't start to show up until after I hurt my back at work I was 32

and did construction my sister has a desk job and she doesn't have as many

problems as I do.

I've been disabled since I was 32. I'm 40 now if I knew I had CMT I could have

went in a different direction with my job and still be working

insted of being in pain and taking Valium and soma 4 times a day.

If one of your kids likes sports what happens if he's on a team and his symptoms

just come on quickly and he gets hurt or brakes his ankle since

you have week ankles when you have CMT.

So maybe you should sit down and have a talk with them and explain

all the problems that they can have. I wish I knew I had it when I was younger

and I think it hurt my dad to see me this way. So think about telling them you

never know what age it will hit them.

Tommy

[Guest guest]

My two cents worth.

This was a difficult choice for my wife and I. Our daughter was

happy and energetic and all that a child should be at 7. We had her

tested, and it appears (no genetic conformation) that she has CMT.

We had debated for weeks about if/when/what to say to her before the

testing. After the tests she, on her own initiative, simply asked if

she had the same thing that I have. We told her yes, and tried to

explain to the best of our ability what it means to have CMT.

Since then she has been a happy and energetic 7 year old, who now

understands why she falls down in her ballet class. BTW CMT will

not stop this girl from being the woman she wants to be.

Mike **** Amen, Mike! I sat in the chair next to my Mom when he told both of

us together I had CMT. The next day I went to Ballet, and proudly told my

friends " I have CMT " . I didn't understand much about it then, but it has not

stood in my way of becoming the woman I wanted to be. ~ Gretchen

[Guest guest]

Hello Mike,

My two oldest boys showed symptoms of CMT early on so in their hearts

they knew they had it and was not concerned about having it all. They took it in

stride and moved on. Kids handle things better then we give them credit for.

Heidi