I am 20 years old and currently contemplating every aspect of my future HD test. This has been a thought in my mind since my fathers diagnosis in 1997. Since then, my sister has also been diagnosed, and is probably in the third stage of the disease. Anyway, I was wondering if there is anyone out there who has tested positive for the HD gene, yet still decided to have children. I plan on being tested sometime within the next year, which is going to have a large impact on starting my life as a college grad, out in the real world. I always try to think of ways that i can "take care of things" before I begin showing signs (following a positive test result, of course)-ways that I can live my life that will have minimal impact on the ones I love. THe only thing I cannot imagine living without is the experience of having children and being a mother. I am the youngest of five children, an aunt to 11 children-big families and nurturing runs in my blood (unfortunately, so does HD). Anyway, lately my thought has been that if my test comes back and my count tells me I am going to start showing signs at 35, or AT ALL for that matter, I think my initial reaction is going to be to want to have children as soon as possible-I want to be healthy and symptom-free for as long as possible in my childrens lives. So-I want children, possibly more than I want a true love or husband-it is something that I dont think I can do without. The downside to this, however, is that I know what my children could possibly go through, and it is my ultimate goal that no innocent people have to suffer on my behalf because of my disease. My father has been showing signs of hd since my birth, and he is now completely dependent and needing care 24-7. I know the kind of resentment that can live in the heart of the child of an HD patient. I could not live with myself knowing that I caused that kind of pain for my child. The situation could possibly be different considering the technology available today that can secure the fact that my children are HD-free. I just don't know. Luckily, I still have time-but I am starting to feel that time is only making my worries more complex, and less clear and obvious.
What I am interested in is anyone who has been through/is going through the same thing. I need some insight...perhaps some reassurance...and definitely some relief. Thank you.

Wow,

You ask some hard questions. Ones that most of us have also spent many hours thinking about. I am 46, at risk. I am starting a new relationship with a woman that wants to have children. I have 2 from a previous marriage. So, here's how I plan to proceed.

1. If the relationship goes well, I plan on getting tested.
2. If Neg, no problem. If positive, then we can decide on whether to have children. You have mentioned that you want them, regardless. If so, technology can make sure your kids are HD free. Not sure of the cost, but worth it by far. If we decide to have kids, we would use this method.

I have been trying to stay current with the HD research as much as possible. It seems very likely that a cure/treatment is not far off. You mention that you are 20. From what I have read, onset would/should not occur before 30. By then, there very surely must be a cure. So, you are lucky, in my opinion, that you are so young and HD research is to far along. Some are saying that a cure is only 5 years away.

In any event, I would not let this consume you. Go on living your life and try to not think about this. Personally, I would not have kids until after 30, when I was established in my career and my relationship. Just my 2 cents. Kids are a huge responsibility and they do change your life.

The only real question here, IMHO, is this. Should you get tested now?

That's something that only you can answer. Thank God that I had never heard of this disease until 2 years ago. I would have had a hard time going through life wondering if I had it. As we all know, taking the test and getting a neg would be GREAT. But could we live with the alternative result? That's something only you can answer.

I wish you well.

There are a few women and men posters in the same situation as you . I hope they all get a chance to post . I have heard their thoughts before , and they might help . Just knowing how others think the same , sometimes help . But , on a side line , have you ever considered waiting to test ? In my opinion , life changes , greatly , when you know , for sure you have HD , compared to being at risk . I am a grandma . But , my sons who are at risk , face similar decisions , as yourself . All of my best thoughts . db

I can say a couple of things about what you have said. If on the off chance you have HD you need and want a strong partner in the event your children need watched after in there best interest. An HD parent can in some instances be a pretty poor parent. So I would concentrate more on the strong loving relationship of a partner before I ever thought about kids. Good advice even without HD in the picture.

Secondly the only time I think you should not count on a cure is when future children are involved. You should plan for worst case and not best case scenarios. A five yr cure is not likely. Don't plan for that. 10 to 15 yrs is most likely. Even then there are no guarantees.

One cannot guess when symptoms will start. My wife began symptoms in her late 20's. Expansions occurs most frequently through one's father. So earlier onset may happen before you hope it might. My children really have no memories of my wife symptom free and have had very difficult lives. Not the one at all I wished for them. Certainly not the one my wife envisioned for them.

While making sure they themselves don't have HD is fine... that in no way ensures a happy childhood as they watch one parent fade away and the other struggling to deal with it. That doesn't include all the other relatives that may fall victim and they watch get sick and pass on. To me that is kind of a sad, scary, and lonely childhood.

Most people say they would not wish HD on there worst enemy but some turn around and have children. The more kids they have the more the likelihood that they have passed on the gene to their very own children. To me that is almost wishing it on them, although they hide behind various excuses to do so... "could be hit by a bus"... "could get cancer"... "there probably will be a cure".

I don't know what the answer is in general. Certainly not in your particular case. I credit you with looking at all the angles however given your strong desire. Some give not one thought to the future and go with their own wants alone. Thanks for asking and good luck in coming to a decision that suits you.

This is a very complicated question that comes up from time-to-time on here. The responses are different, depending upon one's own experiences with hd and life in general. In this situation, I find myself thinking that you are probably the most "experienced" in what your child could potentially face in a worst-case senario. Your dad had hd from the time you were an infant. So, I would think you should ask yourself, Are you glad you were born? Would you have preferred if you mother had not had you? Has this life with hd in your immediate and extended family been so bad, that you wouldn't wish to inflict it on anyone else (and wish it hadn't been inflicted on you)? No matter how much I try, I can not measure the value of a person's life (or how a person perceives his/her value) I remember asking my husband this and I was surprised by some of his responses. I even asked him that if his parents could have prevented him from having hd, would he have preferred that...to which he said, no, that if they had done that, he would never have lived. He personally loves his life and is glad to be here, for however long that might be. I also asked relatives affected by hd the same questions.

I am not trying to influence you either way. You should not make this decision lightly, and it is great that you are thinking before acting. Life will be painful when there is hd. Life is also painful without hd (as was my own childhood) and the many I see at work daily.

I agree that it is important to have a supportive and loving spouse/partner regardless of what you choose. I certainly wouldn't consider having a child without such supports in place.

Hi CItaly,

I am so glad that you posted these questions and that you are taking time to think before acting. Finding a life partner, having children, testing for HD all require a LOT of contemplation.

Here's a quick version of my story.. My husband and I were dating when I realized I had a serious risk of HD. We worked together to make our decisions and, after our marriage, ultimately chose for me to be tested. That decision was 100% because of wanting kids. I would not have tested otherwise. With a CAG of 42 and family history of late onset (late 50s-60s), we decided to do PGD & have HD Free kids. I now have 7 month old twin girls who don't have to worry about HD. I feel blessed that my husband was so supportive because going through all this would have been an absolute nightmare without him.

In my opinion it is incredibly important that you have a strong partner who wants to travel this scary road with you. It is too much to do alone. And it would be unfair to your kids if you tried to raise them yourself but then you showed symptoms.

Please take lots of time to consider all of this before acting. You are in a very vulnerable situation.

Please let me know if you have more questions, especially about PGD. Check out my website at [www.hdfreewithpgd.com]. It tells the whole story.

Take care!
Stacy

CItaly437,

I am 32 and at risk, I did not feel the need to test at all during my 20s because I already had a child when I was in my teens. My thinking was that my mother stayed with us until she was 35 (after that she was in a nursing home) and if I had my child at 17, then my child would be 18 when I myself turned 35.

What I did not see at that time was this: Even though I have a supportive husband, what my child needs at 16 (now) from her mother is as much as she needed when she was small. She needs a mother as she tries to sort through all these changes in her life. Children do not outgrow their need for a parent to be emotionally supportive.

Please, I think Eric's story says it best. He really did a good job at explaining life as a child when one parent is sick and the other is losing their soul mate. I grew up in that home.

On the other hand, my mother had HD when she had me, and I am glad that I am here today and have had chance this long. I do know that I am blessed. I really do.

The Father's day before last, the last one we had with both of my HD positive (late stage) brothers were both alive, my father cried like a child in my husband's arms.. he said he always thought there would be a cure. I worry how he will continue to survive all that regret. He is a good, strong man but the weight is absolute. I know my mother would not have chose this for him.

I hope that you feel that you receive the insight you need to make such a strong decision. I have been known for years for being such a strong, take charge person who have overcome any challenge but that has changed for me over just the last couple years, I just hope that you will make the right decision for the future of your family which will be ultimately be the right decison for yourself.

I know that there are people on this forum that have chosen both ways. It's a very personal decision. Life has risks

I debated about replying to this message as I posted something sometime ago and it set quite a controversy but alot of thoughts came out which were good.
There are so many ways to look at this. I am a mother whose husband has HD and my two children are at risk. I have two beautiful little granddaughters at risk now as well. I struggle alot with what they have to think about and pray they never have HD. I also pray for a cure which with all going on anymore there is sure to be one and the sooner the better, of course.
I didn't know much about HD when we had our two children. I wouldn't trade them for the world. They are beautiful people making beautiful contributions to this world and of course, I want them to have a life free of HD. Of course, should we not have had them they would not have been here and I cannot imagine the world or myself without them. They have also said they are glad to be here.
My daughter struggled with testing and having children. She checked with a couple facilities that could determine if the egg was HD free or not, however, they said they couldn't guarantee it at 100%. In the end she decided to have children and put it all in God's hands. She is a very well educated, intelligent person. She felt by choosing certain eggs and destroying others that was killing life and she could not do that. Some would agree with her decision, others would not. But that is the way with many things in life.
I had a counselor who works with HD patients tell me when I told her about my innner struggle with this illness that maybe a child born into a HD family will find the cure.
It is a very difficult decision and one that you must not take lightly. You need to look inside yourself, wait until you are at the age you feel you are actually ready, read all the comments to this posting of yours and decide for yourself.

I think the controversy was the 'tone' of that last thread. The original poster was dispondent over the loss of her husband and children.

We live in a different time now. We can screen children.

If you know you have HD, you can do the check and abort the child if it comes up positive.

You can simply have a natural child and hope for the best of course. There is a 50/50 chance of NOT having the disease if the parent is positive.

Or if you have resources and the patience, you can do the PGD thing. As long as both parents fully understand the responsiblity and accept the consequences, then it's a personal decision.

As someone else already posted, it's isn't realistic to assume there is going to be a cure. We hope with all we have that indeed there will be one, but to pin all hope on that isn't really a good game plan.

The non-HD spouse has to be able to accept the loss of both the child and the

I think the controversy was the 'tone' of that last thread. The original poster was dispondent over the loss of her husband and children.

We live in a different time now. We can screen children.

If you know you have HD, you can do the check and abort the child if it comes up positive.

You can simply have a natural child and hope for the best of course. There is a 50/50 chance of NOT having the disease if the parent is positive.

Or if you have resources and the patience, you can do the PGD thing. As long as both parents fully understand the responsiblity and accept the consequences, then it's a personal decision.

As someone else already posted, it's isn't realistic to assume there is going to be a cure. We hope with all we have that indeed there will be one, but to pin all hope on that isn't really a good game plan.

The non-HD spouse has to be able to accept the loss of both the child and the HD spouse. That' a tall order to put on someone too.. That's the key. How would the spouse deal with those loses plus the loss of HIS grandchildren and their future?

Of course, making educated decisions relies on one or both parents knowing whether one of them is at risk.

I don't remember Blake's age, Fred. Did you and/or Lisa know about her HD status prior to conception - if I may ask......

Jl the question was about people who were aware and had kids anyway. No sense discussing those who were blindsided... There is nothing those people can do but sit back and wait things out once they do know. I wasn't aware of HD for my first son's birth. The second son was born with knowledge of HD but the pregnancy was unplanned as we had chosen to have no more children. Abortion was not a moral option for Teresa. For myself either, but it was not my choice in either case.

Eric, I never knew we had the part about the 2nd son in common---abortion was an option for me at the time--but also at the tme i ws being bombarded w/the first knowledge of my dads hd, putting mine and his past to rest,My own gene status, my hsnds grma dieing etc etc etc---alot of stuff dropped at 1 time--normally for me abortion is not an issue {for me only, I am pro choice -since I dont walk in everyones shoes}---I remember having the abortion clinic # in my cell phone contact list while waiting his results------Now thinking back, I am so glad he is a Neg result---cuz he is a blessing --- but the blessing does not come from his neg result it comes from him being born and being apart of our family--I am glad he is gene neg---but believe now that had he been gene pos and I aborted him I would have a difficult time w/ that decision now.

agian just my 2cents
DCb

Eric - I think you misunderstood my question.

That's exactly what I was asking. Whether Fred and Lisa knew about Lisa's HD status prior to Blake's conception.

I honestly didn't remember.

Your use of the word "blindsided" would indicate that they were not.

I WAS aware of the fact that I might be at risk, when I got pregnant. I could have been more cautious, but I thought I was sterile (my ex might have lied to me a bit!).

Regardless - I did get pregnant. I miscarried (through no action of my own.

But since my father - who was then in his late 60s - finally started to show unmistakeable symptoms - I had myself fixed. I haven't regretted it.

I'm sorry if that offends some. That is not my intention.

JL, I also had a miscarriage, I'm sorry for yours, I know the emotional pain it brings.. Pat

CItaly, one thing not yet mentioned is the fact that you feel so strongly that you must have a child to feel you have accomplished your goals in life. When I was a young woman I believed I would have many children. I absolutely loved taking care of children. I had no notion of HD until I was 43. I didn't have children, because we were infertile. So the decisom was made for me by nature. But despite the fact that I never accomplished motherhood, I have lead a very very rich life with children. I've mothered nieces and nephews who loved me dearly. I've worked in elemenatary schools both in jobs and now in volunteer work. There are so many ways to love and help children. You don't have to give birth to help this world and the children in it. And I say that from the viewpoint of someone like you who thought she wanted more than anything to be a mother. I am very glad now that we were unable to have children. I have not passed on my HD gene, which makes me feel so proud. I have stopped HD in my little way!! To say that someone is glad to have been born even though they have HD is not really a good arguement, as if you are not born you are not you. So that is a weak reason to have children, to think that they would be glad to be alive. Of course they would, but since they were not born, they have not lost. JMHO

I also planned to have lots of children. 7 years with my first husband didn't produce any.

Then with my second husband - wham, bam - I got pregnant without even trying! As a matter of fact, I honestly thought I was infertile. That's why I say my first husband may have fibbed a bit about his fertility tests (if indeed he had them!).

By the time it became clear that I was at risk, after all - I recognized not only the importance of not passing the gene on - but the importance of my ability to competently raise a child.

I chose not to take that chance. Raising children is such a long-term (!) commitment!

I quite frankly don't think that not being born under certain circumstances equates to not being born at all.

I'm quite confident that anyone who's destined to be born WILL BE.

Maybe in another body........

I really appreciate all of the responses to my original issue. They do help me out.
I know some of you may not think that posing the question of am I glad to be alive or not? is not incredibly valid...but when i read that response and that question, things became a bit clearer.

I am happy to be alive. I thank god every day for giving me another day to live. Do I wish I was never born? Absolutely not. Some people may feel differently, obviously, but I would not trade my life for the world...Everything that I have experienced and been exposed to has made me who I am today. Don't get me wrong...I was severely depressed in my teen years-dabbling in self-mutilation and eating disorders, incredibly low self-esteem. I suffered from a nervous breakdown when i was 16. It was a definite wake up call, as well. At that point in my life, I would have told anyone that I wished I was never born, but by some grace of God, I realized how lucky i really am and how I need to love everyone and everything (now i think i love too much! im a softy!)...anyway, not to get off on a tangent...

I also wanted to reinstate the fact that if I were to have children while being positive with the HD gene, I would go to great lengths to ensure that they are HD neg. I could not live with myself knowing that I brought this into my childrens lives. I would weigh my options...I have a very open mind.

And like Alice said, there are always ways to make a contribution to a childs life-a child that is not your own. I understand that; I have 13 nieces and nephews that I have been helping raise since the day they were born. I try to be the active auntie in their lives, but honestly, it is not filling that gaping void I have in my heart for a child. I can love and nurture and discipline and care for them all day long, but when they wake up in the middle of the night, it is their mothers and fathers that they are looking for-not me.

Again, thank you for all of the feedback-I am so appreciative to have opinions from others in similar situations as myself that are not a part of my family. Its such a relief!

Hi CItaly347

our first two children were conceived without the knowledge of HD being in hubbys family, our third was not long conceived when we found out hubby had the gene - but to me the option to abort did not enter my head

we have 3 lovely children and yes they are at risk but i dont sit there and think about HD everyday otherwise i will lose the great mmoments we have now

having children is a personal question and one that only you can and will find the answer to

equip yourself with some more knowledge, look at all the possibilties then decide what it is that you want

I havent read the responses above (cos its getting late here) but everyone brings their knowledge and experiences to the forum and that will help you make a decision

even without HD, children should not be rushed into - you cant send them back

We were not sure of the wife's HD at the time of conception. I wasn't aware of the test in 1993, that was before the "internet", at least for me it was. Had Al Gore invented yet?

Truely we weren't aware of Lisa's condition for some years PAST what I've heard here. The genetic test was done only to verify the GP's visual / family history / diagnosis. My wife had already been stumbling and wrecking cars for some years before we actually acknowloged it was HD. We were both in "Denial".

If we had known for sure, and we could have tested the baby, we would have. At the time that option wasn't really available to us. They were still doing gene comparison tests at the time, and nobody in the family wanted to participate/pay for that.

Lisa didn't want to have an HD positive baby. But without her diagnosis, the chance was 25%-75%. I figured that was pretty good odds and she showed no sign.