Re: CMT parents with CMT children please help

[Guest guest]

Hi ,

It might help if you just assume you will have children with CMT. I always

thought CMT would never affect my children. When 3 of them were diaganosed, I

was not prepared at all.

I find it very difficult to watch my CMT kids suffer. I do stay optimistic most

days.

[Guest guest]

,

I have always thought about it this way. I know that I am very happy that my

parents decided to have children (i.e. Me). I don't regret being here and enjoy

life everyday despite aches and pains. So the decision for me to have children

was not all that hard. I have educated myself and do everything that I can to

slow the progression of my daughter's CMT.

She is my only on right now and she did have it, but that won't stop me from

trying it again.

It's a personal decision, but I know I made the right one for me.

Mandy

[Guest guest]

,

Do you know about PGD for having children without CMT? PGD is a type of

in-vitro fertilization, and the last info I had showed 4 children were

born to CMT parents and those children DO NOT HAVE CMT.

PGD is short for Pre-Implantation Genetic Diagnosis. Go into our Files,

look under Pregnancy and CMT, and find the info.

While I am not a parent, by choice, I was a CMT child myself, and there

were many times life was hard and I struggled. I chose not to have

children because I doubted my ability to care for myself, family and

children with CMT. When I was diagnosed, (40+) years ago, the genetic

link for CMT had not been fully established or understood, it was

mainly my FEAR of passing on CMT that propelled my decision.

As I started reading more and understanding CMT I also learned that

sometimes " 2nd generation CMT " is more severe. This too led me to my

decision, even though I am the only one in my family with CMT, but in

my teens and 20's, with the falls, tremors, muscle cramping, etc., I

thought what I was experiencing was pretty bad. About every month I

would be reminded of my womanly 'role' to bear children, and after much

thought (for years) decided I should not have children. There were some

other factors I considered as well related to CMT.

Fast forward to 2006 when Reproductive Medicine and CMT genetics have

come a long way and allow parents with CMT to have NON-CMT affected

offspring. If I was 27, and considering having children, I would

certainly look into this now.

Rest assured I have no regrets on not having children. My life has been

so full and rewarding and continues to be such.

~ Gretchen

[Guest guest]

,

Last night, I attended " Talent Night " at the MDA summer camp. I was

so proud of all the children there. Many had conditions far worse

than CMT.

My 8 year old daughter was having the time of her life. She is

happy, and well adjusted.

She has a firm understanding of what CMT is and how it affects her

abilities, but she does not let it affect her activities. She will

try anything. If she falls she knows the reason and gets back up to

try again.

She is smart and cute and brings me more joy than anything else in

life.

Nothing compares to having a child.

I know the struggle. I have pondered the same thoughts. Is it fair

to bring a child into the world knowing that there is a 50/50 chance

of a disability?

My thoughts are clear after seeing last night's talent show, after

watching the kids and their parents. The joy that a child brings is

worth every effort and risk.

Mike

[Guest guest]

Mandy,

What type of CMT do you have? Is your daughter's CMT the same or

worse than yours?

Were you CMT symptoms after having her the same or did you get weaker?

My own CMT type is still unknown so I'm still trying to find out so that if I

want to have a child I am fully educated by researching and talking to other

parents. Thank you so much for writing me you have made me more comfortable in

contuining my investigation.

[Guest guest]

Gretchen,

I seen the written study on PGD, but at this time since my doctors don't know

what type I don't think that wonderful in-vitro thing will work. If they find

out what I have then maybe I can go that route.

[Guest guest]

,

I do not have CMT but my husband does. Our oldest son has CMT. He is now 31 yrs

old. He is a joy and a delight. Yes there have been difficult times but we had

another son who did not have CMT but had meningitis as a baby and became

severely brain damaged from it. He died 7 yrs later.

We then had a daughter who also did not have CMT but at the age of 4 was

diagnosed with cancer and died at the age of 5 yrs 10 months.

So I look at that and say there are many things worse than CMT and things we

cannot predict or control.

I feel worse that my oldest son had to have 2 siblings that died than the fact

that he has CMT. Just like any parent I wish that my son did not have CMT but he

does and we have dealt with it along the way.

I wish you good luck in whatever you decide. By the way, my brother-in-law has

CMT and he has 3 children who have had varying forms of it. All of his children

have young children now.

Eileen

[Guest guest]

,

I have CMT Type 1A. At this point the severity of my daughter's CMT seems to be

about the same as mine. As I am fairly mild in that I am able to walk just fine

without AFOs but have had surgeries to correct foot deformity. I have some pain

and am weak and mostly uncoordinated. My daughter is about the same. I am the

fifth generation in my family with CMT. We all have been about the same. My

grandfather was even a fireman until his mid 40's. He retired due to disability,

but I'd say it was a good run.

My pregnancy really did not affect my CMT much other than the extra weight cause

difficulty in mobility and forget closing my eyes in the shower. It was a good

experience all in all and I hope to do it again soon.

Mandy

[Guest guest]

,

I was in your shoes when I was 32, diagnosed with CMT at 28, my doctor did not

know the type either. My husband and I decided that we didn't want to pass it

the next generation, so since PGD was out, we started the adoption process.

Well, half way through the adoption, I got pregnant( A big surprise!) and now

have a beautiful two year old girl who is healthy and show no signs of having

CMT as of yet.

My CMT remained the same after having her.. no worsening of symptoms.

Since we consider her such a huge blessing, I am now pregnant with #2, which was

planned. Our minds changed after our daughter was born. So, as everyone else has

said, it's personal decision.. Good Luck :-)

[Guest guest]

Hi .

Our 6 year old son with CMT is a spontaneous mutation so it can happen out of

the blue too. A neighbour asked us if we felt

guilty that we must have done 'something' for this to happen, I realized how

futile it is to go down that road and feel bad about whatever genetic changes

spontaneously happen.

I was a preemie baby, less than 2 pounds, my parents were in limbo for months

unsure if I would survive,nearly died of SIDS, by accident the message across

the Atlantic got scrambled and family in the UK thought I had died!

It seems there are so many different things that can happen, genetic or

otherwise that every wholly healthy child is true luck.

Our boy is such a joy and delight I can't imagine not having him in our life, I

never understood how having a child expands your heart until I had my own.

That said, I can't speak to how much of a challenge it would be to

parent already having CMT yourself, and complicated feelings that go

along with it. It is such a personal decision.

I wish you best of luck with your choice.

Sally