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

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Old 25-03-10, 09:47 PM   #11
DH
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Default Re: Sad Pregnancy News

Self deleted post: changed my mind, too emotive.
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Old 25-03-10, 09:52 PM   #12
kayleigh
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Default Re: Sad Pregnancy News

hhiya wwelcome too thhe messagee boardd:) imm reallyy srryy to read thhis itts lso sad:( but ii alslo thinkk tthat your doingg the right thing you hhavve comme to theee rightt placee forr advicee andd support:)

i lostt myy dadd andd grandad bothh to hd anndd thenn i was diagnosed withh juvenile hd im 22 nnow and imm in a wheelchhair iv also gott a litttle girl olivia shhes at risk x
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Old 25-03-10, 10:46 PM   #13
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Default Re: Sad Pregnancy News

Hi Cmiz

This is a hugely personal decision ...... but I have to say I absolutely agree with your decision and my thoughts are with you as you go through this process.

My partner and I are currently trying for a baby and are going to use the CVS test and termnate HD+ babies....I personally could not live with myself bringing a HD+ child into the world, I know the hurt and destruction this disease has already bought to my life, I do not want to inflict it on another.

I wish for a HD- pregnancy for you soon, take care

X X X
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Old 25-03-10, 11:18 PM   #14
DH
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Default Re: Sad Pregnancy News

Matt, pasnthru never mentioned us ALL having a choice, s/he is just talking about people who are aware of HD in their lives and then having kids regardless. You've got HD so won't have children - that's what pasnthru says is the right thing to do and I agree. I've got a child but was unaware of HD in my family when I had her - and nowhere do I see any implied criticism of me by pasnthru. So why the need to "challenge" pasnthru?
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Old 26-03-10, 01:33 AM   #15
cmiz
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Default Re: Sad Pregnancy News

Thank you for all your very kind replies, this is the first time I have ever spoken with people who also have to deal with HD and I am so glad I found you all.

As much as I think my decision is the right one, its the right one for us, and it is the stamping the gene out of our family that is keeping me going. However everyone has their own thoughts and opinions which I respect.

Good luck to you Stardust, hopefully we will both have good news to share in the future.
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Old 26-03-10, 02:39 AM   #16
just1moreperson
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Default Re: Sad Pregnancy News

Quote:
Originally Posted by pasnthru View Post
I guess that is the way here because most of the posters here already do have children. How could they agree with this if they didn't follow up with stopping HD dead in its tracks?

Quote:
Originally Posted by DH View Post
Matt, pasnthru never mentioned us ALL having a choice, s/he is just talking about people who are aware of HD in their lives and then having kids regardless. So why the need to "challenge" pasnthru?
If you read what Pasnthru says, Dave, there's just an assumption that most people on the board did know the risk when having children and decided to go ahead and have them anyway. It's that which I challenge because it's a false assumption.

I could probably make a really long list of people here who were either born at risk (with parents that didn't know the risk of HD) or people themselves who've had children not realising the risk.
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Old 26-03-10, 03:20 AM   #17
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Default Re: Sad Pregnancy News

Hi Claire,

Firstly I am so sorry you have been put in this position, what an awful decision to have to make. Although you may never feel comfortable doing the 'right thing' you would feel the same if you went ahead and had the child so which ever way you do it, you will feel bad.

It is good to come here and talk to people, is there no option for PGD to decrease the pain of falling pregnant and going through testing? I know expenses can be high and the success rate might be low (only from what I read online mind you) but you are making a decision not only for yourself but for another person who would be born with HD in their future. It seems you are thinking more of the child than yourselves and I commend you on this.

I feel terribly guilty for having children knowing my husband was at risk. However he lived in another country, his Dad had died & I'd never seen an adult with HD or had any knowledge of what this disease was. I thought he would just get sick and die, didn't know exactly what happens to people with HD.

We went to counselling through my Dr, through the HD Association about having children and decided to go ahead and have them. The gene was discovered during my 4th month of pregnancy, I thought this meant a cure was on it's way. How wrong could I be? My firstborn had behavioural issues and we had a second child not knowing the reason the firstborn's behaviour was out of control due to him having JHD. In fact my GP had never heard of JHD, the Association had never heard of it before either.

So since 1999 when my firstborn was diagnosed at around 5 with it I've had to care for him until he passed away at 7, care for my second child who passed away last April with JHD aged 11, still caring for my husband who lives in a facility and upsets me every visit with how this has affected him, live with depression and crying all the time for the way my life has turned out and then come here and be made to feel guilty because we had children knowing my husband was at risk.

We didn't have internet and personal contact back then, we didn't have people over the world to share experiences with and when I read pasnthru's comments it's caused me more anguish and tears that I was irresponsible to have my children.

Nobody should be made guilty for the choices they make in life, I feel my life is going backwards from a happy family of 7 to a sad family of 3. Please don't make me feel worse than I already do for what I've put my children through and my family through. I take the blame but don't want to be reminded of it when I come here to support someone else going through a traumatic time.

Sorry for this but my life is so stale and meaningless now, please don't judge me for it as I feel the guilt heavily enough.


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Old 26-03-10, 09:57 AM   #18
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Default Re: Sad Pregnancy News

Oh Buddybird, I'm crying just reading your post.

Don't let passingthru or DH upset you - they have no right to sit in judgement over anyone on this board

At the end of the day we all have our own choices to make & we all live with the consequences & we come on this board as you rightly said for support not to be judged or sent on guilt trips.

Do we all want to stamp out HD? Of course we ****** do!
Do I want that any less or do I care any less because once I found out I was pregnant (despite having taking precautions) I decided to continue with the pregnancy? Of course not & the same goes for you.

My heart goes out to you
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Old 26-03-10, 10:25 AM   #19
Mummytoangels
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Default Re: Sad Pregnancy News

Having browsed these message boards (on numerous occassions)... I think everyone has a right to have make a valid choice based on their specific circumstances..... and no one should be judged.

It took me a while to get my head around the idea of CVS testing and had I not been told I was HD positive I am sure that I would have other opinions. But this is what my life has thrown at me and I have made my choice for better or worse..
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Old 26-03-10, 11:30 AM   #20
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Default Re: Sad Pregnancy News

I feel your guilt and pain Buddybird and it hurt me to when I read that,and if we had the internet and forums like this back then I'm sure most of our choices in life would have been different.We went to see a genetic counsellor years ago at my ex's local doctors.She told us the disease skips generations and only the females get it!!!His family were so hell bent on keeping children's 'innocence' and not telling them what was going on around them that they grew up and went on to have kids.Ignorance prevailed.There is so much more information and ways to get it now.Let's use our hurt,guilt and pain for our children now to help other people not make our choices by telling them how it is and was for us.We wanted our children,just not this disease that came with them
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