Re: Reproduction and CMT

[Guest guest]

That won't happen because of spontaneities mutations. I don't have CMT in my

family I am the first. Its a hard road either way to have children or not to

have children. I had two different CMT friends tell me that they didn't have

children because of CMT and now wish they could change that decision but it was

to late.

One friend told me she missed the children she never had like they were ghosts.

Those of us with children usually wouldn't change a thing.

- (mother of 5, 3 with CMT)

In a message dated 7/26/2009 10:58:46 A.M. Pacific Daylight Time,

slumpville@... writes:

But if we choose not to, or our children choose not to, could we wipe this

disease off the face of the earth.

[Guest guest]

Hi ,

I have 3 children and I have 1A. Its a choice and a question that we all need

to answer our selves. My thought is that it is not wrong knowing that this

might happen. To me it was just another risk of having a baby. Our third son

was born when my wife was 38.

There were risk in having a baby when she was that old. Who knew women really

have a biological clock. Guess I learned when our first child was born. She

was already 30 then. No major issues just minor stuff with each. We are very

blessed.

Although 2 of the 3 I figure has CMT, I would not change a thing. There are

nights and days where I wish my oldest did not have pain. I would do anything to

take her pain away, plus it hurts me too. I tell myself it makes her stronger

as a person. Who knows, I can only do my best. :-)

Take care and good luck with your decision.

Matt

Ontario Canada

p.s.

one last thing to remember, we all pass things onto your kids. Other stuff

too, heart disease, diabetes etc... I think you get the idea.

[Guest guest]

,

What do you mean by " wrong " ? Certainly, it's not illegal.  So I assume you are

asking if it's unethical or irresponsible.

I don't believe that it is unethical or irresponsible, because we are talking

about a disease that impacts people in very different ways.  For the majority of

afflicted people, lifespan isn't affected. Also, for many, their quality of life

isn't impacted significantly until later in life, if at all.  In addition, even

though some life choices may prove to be too challenging physically, there is

still a wide array of life choices and career paths available to us and the

contribution we can make to society is still substantial.

Lastly, even though there is no cure yet, early intervention in childhood with

some problems, such as foot/tendon issues, may lessen the impact later on.

Putting things in perspective…

With all the scientific advances in genetics, we have come to understand that

nearly every disease has some genetic component. We also now know that no one is

free from genetic flaws and many people carry flaws of much greater impact than

CMT, such as diabetes, cancer, and heart disease. Since these types of diseases

take a greater toll on quality of life, the financial stability of our

healthcare system, as well as our mortality rates, should restrictions for

procreation be placed on these people as well?

I hope not, because once we begin to dictate who should and shouldn't have

children, we are getting into very dangerous territory.  We have only to look

back on our own countrys history with Eugenics to see the folly of such a

course.  This societal movement in the early 20th century resulted in massive

human rights violations as well as a serious invasion of personal privacy.

After WWII, society came to realize that procreation is a matter of personal

choice that should be respected, an individual decision that each person has a

right to make for him/herself, while weighing all factors.

As genetic technology has become more advanced, the topic of Eugenics is being

discussed again.  Hopefully, we have learned our lesson and will avoid repeating

the mistakes of the past by continuing to allow individual freedom of choice in

this regard.

[Guest guest]

Mark - Thank you for sharing your views so honestly.

This entire subject of whether or not to procreate when you know you carry a CMT

gene is too personal to discuss via posts. The nature of words is often time

misconstrued in the writing without being able to hear the inflection and

emotion in peoples voices.

A person doesn't need to procreate to leave an heir or carry on a family name.

Parenting is more than biology. Both of my children are adopted. The irony here

is that my eldest son has CMT. He was a healthy, happy 9 day old infant when he

was first placed in my arms and I cannot ever imagine anything that would have

made us change our minds about being his parents. When he was late to walk we

dealt with it. When he was diagnosed at age 9 we dealt with it and we continue

to push forward facing each obstacle thrown in his way because of his CMT.

" Healthy couples " can produce a child with CMT due to spontaneous mutations.

This is what happened to our son. Whether or not he decides to procreate will be

his personal decision, and while I am sure that his CMT status will factor into

that decision no one has the right to pass judgement on whatever that decision

may be. Just my thoughts.

I believe that there will be cures and effective therapies in his lifetime and

the availability of such will surely have a part in the decision making process

of those deciding to have biological children.

I respect your cautious approach to procreation...if it works for you and your

spouse then you should follow your heart.

[Guest guest]

Yes, exactly. And, we, as humans, pass down the ultimate disease every time we

decide to have children: Death. It doesn't get any worse than that.

Even though I have a severe form of CMT, and have 'suffered' through all its

pains, and hardships, I have still had an immensely enjoyable life, have

traveled, been married, had children, etc. If I had such a good time while being

disabled, then certainly giving a disability will not prevent me from

procreating.

We all die, anyway ... even those arrogant ones who see our quality of life as

being less than theirs. Yes, Death does get the last laugh.