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Genealogy, children, PGD Discuss family and preimplantation genetic diagnosis issues

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Old 14-11-09, 01:28 AM   #1
DestinyFate
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Default Fate? Destiny??

Hi I'm not sure how to say what I want to but here goes.

I tested positive for huntingtons and the most upsetting thing for me was thinking about how this affects me having children. I have wanted children all my life and before all this happened me and my husband were deciding to start our family.

Since getting my bad news all I can think about is children, I've gone from thinking about the IVF and PGD route to saying just do it naturally and leave it up to God as what will be will be no matter what I do and i strongly believe that major events in your life are pre-written so if I'm meant to have a child I will and if not I wont and also if that child is meant to have HD it will etc So is it worth all the "hassel" of IVF and PGD?? at the moment I'm thinking not but Surely i should do everything I can to have healthy non HD child? Will my child hate me when it grows up if i do the natural route? can I deal with other people judging me?

I know at the end of the day its the choice of me and my husband and only we can decide but I just want to see if anyone understands and relates to how I'm thinking and feeling and also how others feel about this issue. I won't be offended by peoples views or opinions even if they are the complete opposite to mine, just wanting to get it off my chest really.

Anyway enough rambling for now hope to hear from lots of u

Destiny x
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Old 14-11-09, 04:52 PM   #2
just1moreperson
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Default Re: Fate? Destiny??

I shall try not to offend you Destiny but when I hear people saying "what will be will be, it's up to God" I have to say something because it doesn't sit well with me.

You have the power to stop your children having HD so why would you leave it up to God?
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Old 14-11-09, 06:52 PM   #3
Suki
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Default Re: Fate? Destiny??

I have to say I agree with Matt on this. If my parents had known when they had me about HD, I think I'd come to terms with that, I was an "accident", anyway. I'm not sure my sibling would though (we're like chalk and cheese). I won't go into the religious aspect, but "fate" can deal some very cruel blows.
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Old 14-11-09, 07:51 PM   #4
pasnthru
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Default Re: Fate? Destiny??

Quote:
Originally Posted by DestinyFate View Post
Hi I'm not sure how to say what I want to but here goes.

I tested positive for huntingtons and the most upsetting thing for me was thinking about how this affects me having children. I have wanted children all my life and before all this happened me and my husband were deciding to start our family.

Since getting my bad news all I can think about is children, I've gone from thinking about the IVF and PGD route to saying just do it naturally and leave it up to God as what will be will be no matter what I do and i strongly believe that major events in your life are pre-written so if I'm meant to have a child I will and if not I wont and also if that child is meant to have HD it will etc So is it worth all the "hassel" of IVF and PGD?? at the moment I'm thinking not but Surely i should do everything I can to have healthy non HD child? Will my child hate me when it grows up if i do the natural route? can I deal with other people judging me?

I know at the end of the day its the choice of me and my husband and only we can decide but I just want to see if anyone understands and relates to how I'm thinking and feeling and also how others feel about this issue. I won't be offended by peoples views or opinions even if they are the complete opposite to mine, just wanting to get it off my chest really.

Anyway enough rambling for now hope to hear from lots of u

Destiny x
So if GOD created man and allowed him to learn about genetics to enlighten us then how can you say it is up to GOD? Isn't it up to each of us to research what is the educated thing to do? This throwing to the wind..irresponsibility..only makes HD continue on and on and on. I really do think it all comes down to selfishness. When I see people here talk about if their parents HAD KNOWN then they may be upset..hello..if you do know and decide to go ahead with your head in the sand for GOD to determine your fate then well..We aren't much higher up on the evolutionary scale than an earthworm huh? not using what "GOD" has given us to think for ourselves.
Why would anyone want a child knowingly when they are HD posiitive? There are reasons for the discriminations here. HD is so bad that it affects every aspect of our lives. Whether your child is positive or not you are positive. Why would anyone knowingly bring an innocent infant into this madness? It just really blows my mind. I don't think anyone who has gone through the whole HD progression from beginning to end would even consider allowing this curse on any of their loved ones much less their own creation.
I know that you're going to do what you are going to do but please try to understand that "again" you WANT a child. Children are not toys.
I don't understand why people who carry the gene and are found to be positive don't either sterilize or whatever so they will not have to be put into this situation. Maybe the government will decide for those of us who can't seem to get it and I absolutely hate the government telling people what to do. HD costs are astronomical from beginning to end. These don't just account for the institutional costs but for the trama that the loved ones end up living through too. Lives are scared permanently from this. I'm talking about depression, PTSD, suicide, etc..
I know that you don't want to hear my opinion but I will keep tryingto get my point across as long as I am allowed to post here.
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Old 14-11-09, 08:28 PM   #5
just1moreperson
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Default Re: Fate? Destiny??

I've gone through the disease progression from beginning to end with my father. He was diagnosed when I was 6 years old and died when I was 21. Now I'm HD positive myself and while I wouldn't have a child at risk of HD if I could help it, I would certainly allow my HD free child to grow up watching me suffer. No problem with that at all, that's something you can deal with together as a family and get through. It may even make the child stronger in the process. It depends on the parenting we provide for our kids really.
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Old 14-11-09, 11:30 PM   #6
Caz
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Default Re: Fate? Destiny??

Quote:
Originally Posted by pasnthru View Post
Why would anyone want a child knowingly when they are HD posiitive? There are reasons for the discriminations here. HD is so bad that it affects every aspect of our lives. Whether your child is positive or not you are positive. Why would anyone knowingly bring an innocent infant into this madness? It just really blows my mind. I don't think anyone who has gone through the whole HD progression from beginning to end would even consider allowing this curse on any of their loved ones much less their own creation.
I know that you're going to do what you are going to do but please try to understand that "again" you WANT a child. Children are not toys.
I don't understand why people who carry the gene and are found to be positive don't either sterilize or whatever so they will not have to be put into this situation. Maybe the government will decide for those of us who can't seem to get it and I absolutely hate the government telling people what to do. HD costs are astronomical from beginning to end. These don't just account for the institutional costs but for the trama that the loved ones end up living through too. Lives are scared permanently from this. I'm talking about depression, PTSD, suicide, etc..
I know that you don't want to hear my opinion but I will keep tryingto get my point across as long as I am allowed to post here.
Hi,
I totally disagree with everything you have just said, and I really don't think that you own bad experiences should make you such an authority on other peopele's lives.
We have all seen HD from start to finish, and as you very well know, the degrees of it are very, very variable.

Caz
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Old 14-11-09, 11:43 PM   #7
pasnthru
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Default Re: Fate? Destiny??

Quote:
Originally Posted by just1moreperson View Post
I've gone through the disease progression from beginning to end with my father. He was diagnosed when I was 6 years old and died when I was 21. Now I'm HD positive myself and while I wouldn't have a child at risk of HD if I could help it, I would certainly allow my HD free child to grow up watching me suffer. No problem with that at all, that's something you can deal with together as a family and get through. It may even make the child stronger in the process. It depends on the parenting we provide for our kids really.
I can certaily agree with you on making you a stronger family but have to say that usually it tears the family unit apart. Did you have a "normal" childhood? Did you finish school and proceed with a career? Can you honestly say that HD did not have a devastating affect on you and the rest of your family? I personally had to put my life "on hold" to take care of mine. I will never know what was known about HD when I was "born" but I do know how very sad and concerned my mother was when she was told that she had HD and how sorry she was. I couldn't bring friends around for fear of them rediculing my mother. There is nothing good about having to grow up around HD unless as you say..makes you stronger. I am totally symphethetic to anyone who has to live with HD in the family. I was there, still am there but to really think that living with HD can somehow be beneficial I can't see. I know that accidents can happen when people are out here having sex but to decide or let "god" decide what will happen to a poor infant seems heartless to me. Science has told us many things and will continue to but as of yet..it tells us that to stop HD now we must stop continuing to have children. I know women and men who threw the warnings to the wind and now have to live with the knowledge that their carelessness has ruined not only their childs but everyone involved with the familys lives.
I see your posts here and think that you are a TRUE HERO. I absolutely admire you for your strength and determination to bring awareness to HD.
My mother lived many years with HD and she died of the "normal" cause of death with HD. I always wanted "GOD" to take her outta here with a masive heart attack or something like that but she ended up withering away to nothing. I just can't see it Matt. HD disrupted everything about this family..
I'm just trying to make sure that at some point reality kicks in. I really don't believe that my opinion is too far off either. Why when pregnant women are given the prenatal tests the DRs. want to test for it?
And again I do respect this personal decision but cannot be quiet when people post asking for advice. All of the support here on this board is great but at some point someone who has a different opinion sholud be allowed to be heard. There are hard choices to be made and hopefully they will be made without the emotion that I keep reading. Passing the problem on to the next generation isn't fair is it? That is why we're all here now.
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Old 14-11-09, 11:44 PM   #8
pasnthru
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Default Re: Fate? Destiny??

Quote:
Originally Posted by Caz View Post
Hi,
I totally disagree with everything you have just said, and I really don't think that you own bad experiences should make you such an authority on other peopele's lives.
We have all seen HD from start to finish, and as you very well know, the degrees of it are very, very variable.

Caz
you are allowed to just as I am allowed to state my opinion.
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Old 15-11-09, 02:07 AM   #9
just1moreperson
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Default Re: Fate? Destiny??

I'm not for having kids at risk. But when you talk about not having kids at all if you're HD positive, even if you make sure the kids are HD free, then I disagree.

Take me as the example, I've grown up watching my dad suffer and eventually die from this disease and I'm now HD positive myself. I have been through a lot growing up around this disease. I left school when I was 13 because of HD and I don't have a career as of yet.

But I'm completely capable as a human being to do what ever I want to do, I have confidence in myself. The reason I don't have a career is because the only thing that I have a true passion for now is HD work. Anything else just seems like a waste of my time, time I don't have to waste. So what I need to do is find a career that I can do to benefit the fight against HD.

So growing up around HD is difficult but it hasn't stopped me. I now fight HD as hard as I can, hopefully so our children wont have to.
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Old 15-11-09, 11:02 AM   #10
nixter5287
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Default Re: Fate? Destiny??

Quote:
Originally Posted by DestinyFate View Post
Hi I'm not sure how to say what I want to but here goes.

I tested positive for huntingtons and the most upsetting thing for me was thinking about how this affects me having children. I have wanted children all my life and before all this happened me and my husband were deciding to start our family.

Since getting my bad news all I can think about is children, I've gone from thinking about the IVF and PGD route to saying just do it naturally and leave it up to God as what will be will be no matter what I do and i strongly believe that major events in your life are pre-written so if I'm meant to have a child I will and if not I wont and also if that child is meant to have HD it will etc So is it worth all the "hassel" of IVF and PGD?? at the moment I'm thinking not but Surely i should do everything I can to have healthy non HD child? Will my child hate me when it grows up if i do the natural route? can I deal with other people judging me?

I know at the end of the day its the choice of me and my husband and only we can decide but I just want to see if anyone understands and relates to how I'm thinking and feeling and also how others feel about this issue. I won't be offended by peoples views or opinions even if they are the complete opposite to mine, just wanting to get it off my chest really.

Anyway enough rambling for now hope to hear from lots of u

Destiny x
Just to throw my hat in the ring......if i test positive for HD (I'm untested at the mo) then I will do everything I can to have a HD-free child. I don't think I could do it the natural way then get the foetus tested and then be told to have an abortion...that would break my heart no matter what the circumstances.

My fiance and I are on the same page as regards to having kids.....he knows that if I have HD then odd are we'll probably not have children. (due to the odds of PGD being successful are so low)

At the end of the day it is COMPLETELY up to you and your husband and as long as the two of you are happy with the decision that you both make...then screw everyone else! It is your husband and yourself that have to live with the decisions that you both make as a couple!

Nic xx
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