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

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Old 08-08-08, 05:56 PM   #31
Patrick
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Default Re: To have children or not?

Any child that is brought into this world will be exposed to sufferring, sufferring is unfortunately part of life, whether youve got HD or not.. theres so many other things out there, so many elements that are out of our control.

Do we think that the McCanns regret having Maddie because they only got 4 quality years with her? I think not.. and yes I pick an extreme case but the point is valid. Also when I grew up at school, there was a girl in my class and she died of Leukemia when she was 12, 3 yrs later her little sister dies of leukemia too.. its a terrible terrible tragedy but not a valid enough reason to not have kids. Its inevitable, at some point in life most ppl will go through sufferring.. the very best we can hope for is to make the most of our 'quality time' cos we'll never know how much there is.
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Old 08-08-08, 06:14 PM   #32
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Default Re: To have children or not?

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and yes I pick an extreme case but the point is valid.
I'm not sure the comparison is valid. The McCanns couldn't have foreseen what was going to happen to their daughter, whereas I know that if I had another child they would have a 50/50 risk of being HD+. Knowledge is the key.
When I had my daughter I wasn't aware of HD in the family and, personally speaking, I wouldn't bring a child into the world knowing they were at risk of developing something as bad as HD. Personally I don't think it is fair to subject another to that level of suffering just to placate an inner desire to procreate. Yes Pat, the world is full of suffering and cruelty; my point is why risk adding to that? And please take all my comments as good-natured discussion, not personal barbs. Fortunately the world still allows free-choice and that's what makes it such a rich and varied place.
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Old 08-08-08, 06:35 PM   #33
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Default Re: To have children or not?

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I'm not sure the comparison is valid. The McCanns couldn't have foreseen what was going to happen to their daughter, whereas I know that if I had another child they would have a 50/50 risk of being HD+. Knowledge is the key..
Yeah your right.. to a point the bigger picture I was trying to draw, ties in with your "Knowledge is Key" comment which is that people still choose to have kids, knowing the worlds a dangerous and unpredictable place.
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Old 08-08-08, 10:36 PM   #34
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Default Re: To have children or not?

(that people still choose to have kids, knowing the worlds a dangerous and unpredictable place).[/quote]

Yes they do, but they do their best to protect them from danger & harm. Ok we can't always do that & sh*t happens in the form of predators & other illnesses that we can't possibly control. But because we know HD is 50/50 then it means we can have much more control for their future by at least going the PGD route.

This conversation reminds me of 'Its a wonderful life' with James Stewart where the angel Gabriel shows him how different life would have been if he hadn't been born.
Believe me when I say that Rikki made so much more difference to mine & her sisters lives, than anyone could even begin to imagine, but that doesn't mean that she should have suffered to do so. I'd sooner have had a severly bad life or no life at all, than for my sweet child to have to improve it for me at her expence.

Years back people were in the same position as me. (Was it really almost 29 years ago that I fell pregnant with Rik? It seems unbeleivable & has sped by far too fast). There was less information then than there is now. In a way it was the dark ages compared to now. There was excuse for having HD at risk children. Naivety & lack of knowledge!
Now we have the internet to find out so much. We have advanced research. We have much more knowledge & choice.
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Old 08-08-08, 10:46 PM   #35
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Default Re: To have children or not?

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. i'd rather be born have 25 years and get ill than not be born at all.....


just my take tho
Pretty much sums up my own thoughts about myself - but a lot more succinctly and with a lot less waffle
No matter that I know what's ahead for me, I'm glad I've had my life :)
(Except in my case it's 46 years )
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Old 08-08-08, 11:26 PM   #36
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Default Re: To have children or not?

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Originally Posted by South Coaster View Post
Pretty much sums up my own thoughts about myself - but a lot more succinctly and with a lot less waffle
No matter that I know what's ahead for me, I'm glad I've had my life :)
(Except in my case it's 46 years )
How weird is that? I've replied to this thread on the basis of my reaction to how it affects my daughter and whether or not I'd have more kids.... I completely forgot that I'm in theory going to get it one day, and how the original question affects me! It's taken SCs response to Katiepies comment to get me thinking...

Thing is, I WILL have a good life before (if) I become symptomatic (always assuming I don't wipe out under a truck whilst on my motorbike... ). But should I have been born at all? I did talk to my Dad a bit about him finding out about my mums diagnosis.. and he said how different life might have been. Him and my mum might not have had kids, they might not even have got married. How does that make me feel? Well, it doesn't really bother me at all, because if I hadn't been born I wouldn't be around to realise that I wasn't here... if you see what I mean. I'm glad I am here, if only to wind up you lot and feed DaintyTrish every now and then, but if I wasn't here? Well, I wouldn't be here to care, would I? And no one would miss me because I wouldn't have been around for you to get to know me and then miss me. Or something.

Bugga, this whiskey is strong.
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Old 08-08-08, 11:43 PM   #37
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Default Re: To have children or not?

It's all nice saying your glad to be alive and to be given a chance at life. But will you feel the same once your symptoms start showing? Then you get worse and worse until your nothing. I can't say I'm looking forward to that lol
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Old 09-08-08, 09:03 AM   #38
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Default Re: To have children or not?

...if I hadn't been born I wouldn't be around to realise that I wasn't here... if you see what I mean. I'm glad I am here, if only to wind up you lot and feed DaintyTrish every now and then, but if I wasn't here? Well, I wouldn't be here to care, would I? And no one would miss me because I wouldn't have been around for you to get to know me and then miss me.

Exactly my point. You can't miss what wasn't.

Becoming a parent is something we do for ourselves...we want a child...its a natural but selfish need.

Another of my points is that even though research will eventually bring something along to help, we have no idea what or when.
Presuming these children don't develop jHD & lead a good life until a ripe old age before developing HD, they are still our children no matter what age & even if we're not gonna be around to see them develop it. They are still our responsibilty.

By the way, I woke this morning remembering that Gabriel was in fact Clarence (I think). Odd thought before my eyes were open. Hmmm. lol
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Old 11-08-08, 11:09 AM   #39
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Default Re: To have children or not?

Seems to me we all have a 100% chance of dying in this life.

And if we had the benefit of hindsight we'd all live our lives differently. My mum didn't know HD was in the family, I didn't know HD was going to be part of the family experience either until my children were out of their teens.

I took the test in part because I hoped to make my children's decisions about having children easier but no magic wands. Would I have more children ? Knowing I'm positive ? No way. But do I support the right of an individual to decide for themselves - yes - I can't make a judgement call on the value of an individual life.

My partner has young children. I could think well in x years I'm going to be symptomatic so I'd better not get involved with anyone but that's not how life works. You can't choose not to love unless you choose not to live.


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Old 19-08-08, 10:28 PM   #40
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Default Re: To have children or not?

I know people of this board try their hardest not to offend. But if and when someone new comes aboard and asks about having children I tend not to see the point of laying out the rosy scenario.

How many here would even wish HD on their worst enemy? When encouraging someone to have just a single child you are half wishing HD on an innocent unborn soul. If two children are born the odds are 75% that one will have the disease, and four future children of an HD+ person statistically means one of the four will be born HD+ also. To encourage people to have kids with any chance of HD while we are at the same time all here praying to God or anyone to take it out of lives, just seems wrong.

There is no unborn child screaming to born. There are many lesser reasons why we have all passed on potential future children. I am too young,,, my house is not big enough... I am too old... I don't make enough money.... I want to start my career. But HD is not a good enough reason? What better reason can you find to decide to not have children? We don't tell drug addicted couples to have children. Why not? Because that child may have a broken home, may have an abusive or neglectful parent, because we know the odds of a bad outcome. We make that judgement on a societal level all the time. Why not with HD? Of course it's the indiviuals right to choose whatever they want to choose. Me, you, a drug addict, everyone. But do we advise them that this is the wise choice? Or do we tell them the honest truth about HD?

The honest truth is we can all dig some worth out of every life. But the fact is we are all here on this board because life with HD is bad. It's about death... mental illness, family disfunction. No one is here on this site to propose the wonderfulness of HD.

Do we want more Myrna's? That poor woman has seen and been through tooooo much! It's a blessing she spends any time here at all for us. I don't even want more me's here. If my oldest son carries the gene his life will change in roughly ten years... my younger in 15 years. I am sitting here just counting days in fear of it... and watching my wife die for the last twenty years and watching them watch thier mother die their entire lives. Is this the kind of parent someone wants to be? Is this the family an unborn child deserves?

Why do want want a cure? Why?????? Because HD sucks ...period! At it's best ... with the best family support... the best doctors... the best of everything it is no good at all. Yes every child will eventually die. Hopefully at 100 years old in their sleep of a heart attack. Some, and by some I mean very very few, will get hit by a bus. Some will have cancer. But very few will ever live life watching two decades of multiple relatives suffering and knowing that that may well be them too... all on a coin flip their parents made. The only certain way for HD to not affect your life or your family is to prevent it. This is the one and only way.

Life is not fair. It's not been fair to any of us here. It doesn't become more fair by inflicting this life on someone else. It only compounds the unfairness of it.

Long before God or the stars decides the fate of this child the prospective parent has their choice. I hope they choose more intellegently than I have chosen.

This is the one subject tham makes me go totally negative on the disease and life with it. We can all raise each others spirits an make the best of what we have. There are solutions to some problems... ways to cope etc. But really... enough is enough. Why new people added on to this board? Why even entertain more JHD? We can't rid the world of HD by suggesting people not have kids. I am not stupid about that fact. Some people are going to be baby factories... ignoring HD altogether. But there are people who look for thoughts on this... and they want it straight or they wouldn't ask. This is not a judgement on any individual here who has had kids. For any variety of reasons we have them. Half of them will be fine. Half have the gene. As advice goes to anyone thinking and asking about a future child...I can't in good conscience say the risk/ reward in anyway whatsoever is in their favor. I can't say do what's best for "you"... I can only say do what's best. I don't care what is best for the person asking in this case. I care that there is no more HD... that I have not contributed in any way to one more sufferer. That's what I care about.
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