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

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Old 15-11-09, 12:01 PM   #11
jaq
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Default Re: Fate? Destiny??

I think like Caz said everyone's experiences of HD are different and therefore their attitude to having their own children differs as well.

I was only 12 when I lost my mum so I feel that HD has robbed me of that relationship that is so central to most peoples lives , as well as leaving me with a range of unresolved psychological issues surrounding these losses. Perhaps if she had later onset and had died when I was in my twenties or even thirties I might have been better able to cope.

My own situation was also made worse by the fact that my father did not bother to fulfil that role and again my own experiences may have been different had I had a father to support me emotionally and financially.

Following the death of my Nana when I was 18 I became parent/ guardian to my younger sibling who is now at the age of only 37 displaying symptoms of HD .

I feel incredible guilt at my inadequate parenting skills and my inability to protect my sibling from HD .My heart is breaking and this is not even my child, while it feels like it because of the situation we were in.

I have not had any children as am at risk and untested and probably due to in my eyes failed parenting of my sibling it is probably a good thing .

HD families are complex and any child in one is going to have a different life to a child in a normal family . I don't know the statistics but due to the strain of HD , I imagine many couples split up leaving a child potentially having to care for an HD positive parent and maybe even other siblings with out often other family support especially on the HD families as many of these will be also fragmented. I have a non HD friend whose husband has left her after 18 years of marriage and with three children to support and this is tough without throwing HD into the equation.

In my imaginary non HD life I would have had a mother and father probably now in their seventies or eighties. They would have encouraged me to go to University and train to be a teacher proudly attending my graduation. Maybe I would have found a job teaching a worked my way up the career ladder whilst getting married and having a family of my own. My sibling would I know have had a successful academic career as even now despite the HD still manages to attend University to study for second degree. We would have had family parties, family holidays, family rows etc etc .

Instead I graduated alone ,my sibling is deteriorating and when anyone asks after my sibling I can't speak without breaking down in tears.

People are always going to have children no matter what their situation and most people would say that they are glad they were born. I personally think we live in a society where having children is elevated above any other life choice and people without children are seen as selfish whatever their reason for not having them.

Jaq
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Old 15-11-09, 12:18 PM   #12
kayleigh
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Default Re: Fate? Destiny??

ddo you all thinkk this aboutt me for hhaving olivia wenn shes at rrisk of jhd cos im really rreally upset by all of yourrr comments i lovee thatt little girl more than anything but we all knoww thatt she will probb gett jhd andd therres nott gonna bee any cures orr anything everrytime i lookk at her irt brreaks my herart coss she doesnrt know that her mummy is dying all she knows is thatt i cant play withh her anymore:(
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Old 15-11-09, 02:37 PM   #13
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Default Re: Fate? Destiny??

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Originally Posted by kayleigh View Post
ddo you all thinkk this aboutt me for hhaving olivia wenn shes at rrisk of jhd cos im really rreally upset by all of yourrr comments i lovee thatt little girl more than anything but we all knoww thatt she will probb gett jhd andd therres nott gonna bee any cures orr anything everrytime i lookk at her irt brreaks my herart coss she doesnrt know that her mummy is dying all she knows is thatt i cant play withh her anymore:(
No we don't think that at all Kayleigh and Olivia has a 50% chance just like everyone else hun. We will all look out for Olivia dear, she has a very brave mum.
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Old 15-11-09, 06:16 PM   #14
pasnthru
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Default Re: Fate? Destiny??

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Originally Posted by kayleigh View Post
ddo you all thinkk this aboutt me for hhaving olivia wenn shes at rrisk of jhd cos im really rreally upset by all of yourrr comments i lovee thatt little girl more than anything but we all knoww thatt she will probb gett jhd andd therres nott gonna bee any cures orr anything everrytime i lookk at her irt brreaks my herart coss she doesnrt know that her mummy is dying all she knows is thatt i cant play withh her anymore:(
Kayleigh this is NOT about you or anyone in particular. It really is just about ME. How I feel about these things that I post. I would never ever judge anyone here because like everyone knows..this is a personal issue. I guess that maybe I am a bit too harsh when I get up on my soap box and sound as though I'm preaching, but I'm just expressing how I feel. I was just telling my opinion on this issue. Everyone has an opinion that posts here and I promise you I am not judging anyone about their decision to have or not to have..just stating how I personally feel. I do understand that different people feel differently about this and do respect that.
I admire everyone on this board and hope that my opinions do not cause any animosity toward me. There is no black and white here and probably never will be but please try to remember that I am only expressing my beliefs...how I feel about this issue.
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Old 15-11-09, 07:58 PM   #15
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Default Re: Fate? Destiny??

Hey guys, yes everyone is entitled to their own opinion and from the looks of things it seems to be their experiences which help to form these opinions, it's nice to see all the different viewpoints even if some are a bit extreme

Ashlee yeh I got ur email thanks I will find time to reply soon lol

Kayleigh I'm so sorry if my thread upset you, I only know what I have read on here about you but for what it's worth I think you are amazing coping with jHD and still bringing up your little girl, It's hard enough for me to deal with knowing I have the gene!!

AS my post stated I am undecided, but saying that I have already been referred to a hospital in London for PGD mainly due to the fact that applying for funding takes a long time but my counsellor is positive I meet all the criteria to get successful funding for one round so fingers crossed and it's also my way of keeping all my options open.

Thanks to you all for sharing your thoughts and experiences so far

Destiny x
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Old 15-11-09, 08:13 PM   #16
jaq
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Default Re: Fate? Destiny??

Hi

You might be interested in this blog the writer has tested positive and is now going through PGD

http://survivinghuntingtons.blogspot.com/

My comments were not meant to be extreme it is just my own experience but I also think it is important that people who have made the decision not to have children may not have done so just because they don't like them but for many of us it has been a hard decision.
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Old 15-11-09, 10:49 PM   #17
just1moreperson
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Default Re: Fate? Destiny??

Best of luck Destiny
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Old 16-11-09, 09:15 PM   #18
DH
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Default Re: Fate? Destiny??

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Originally Posted by DestinyFate View Post
Anyway enough rambling for now hope to hear from lots of u
You asked for it, so here I go.

Russian Roulette is a game that can have fatal consequences. The chance of pulling the trigger on the loaded chamber is one in six. Therefore if six people play the game the chances are that one of them will be killed.

Huntingtons Disease is a fatal condition that kills slowly and horribly. If one of your parents has it then there is a one in two chance that you will get it. Did you catch that? One in two. Rather worse odds than Russian Roulette. But just by putting yourself through a bit of inconvenience you can reduce the risk to zero. Ok so the process takes the romance out of "normal" baby-making, but so what?
I wish I had known that HD was in my family before I had my daughter because now she's at risk (and only 11). If she does turn out to have the gene I'm not sure how I will handle the guilt. Passing on the disease to my own child, the ONLY person I have ever truly loved - even though I'd never even heard of Huntingtons Disease before she was born. But to pass on the disease if I did know what my situation was, that I carry the gene? No, I really couldn't live with myself.

However, despite the above, things like PGD exist in the ideal world where we have the chance to plan and prepare. Ashlee is proof that we don't live in an ideal world; and all the moralising in the world won't change what is happening to her nor will it make her feel any better. What's done is done and if she has her baby then I know she will love it and spoil it to bits and she'll be an absolutely fantastic mum - but one that will be wracked with guilt when she has her darker moments. I wish you both all the luck and love in the world.
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