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

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Old 27-03-10, 11:48 AM   #41
dublinmum
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Default Re: Sad Pregnancy News

I'd just like to say that the key word in this thread should not be opinion or choice it should be RESPECT!

I respect all peoples choices, to have abortions, to get sterilised, to keep their children - I may not agree with certain choices or have the same opinion but I respect each person's right to live their life.

Just as my heart goes out to the original poster cmiz for the tough decision she is taking, my heart goes out to people like passinthru & Trish who have made tough choices based on their opinions & experiences. But you can't make a decision & then be bitter that others haven't done the same as you. RESPECT.

Just one thing I would like to point out, although to be honest I don't think I should have to explain myself to anyone on here but for the record abortion is & always has been illegal in Ireland so I couldn't have had an abortion here even if I'd wanted to. Although I'm sure some people on here would simply have had me get on a plane to get it done.

Anyway, like I said I respect all beliefs, values, decisions & choices & the thing that really upset me yesterday was not that people disagreed with my choice - that is their right - it was that certain people thought that based on my choice I shouldn't even be allowed to come on this board for support because I was responsible for my own situation & even worse that I had damaged awareness of HD in the eyes of the public by having my son as it apparently gives an opinion that HD can't be that bad. I don't believe the moderators on this board should allow people to say who can & can't come on the board for support & I firmly believe that people who are not members should NOT be allowed to make posts & that if people who are members allow their account to be used for this purpose that should be told it is not acceptable!

As I said yesterday these people don't know me or what I've done or will continue to do for HD awareness (for the record since October I've raised €2000 for the HDAI & organised an awareness campaign at my daughter's secondary school!)

HD should be the enemy & we should be using all our energy to fight it & support our loved ones not hurt each other.

As some of you may have seen on my facebook page last night....anyone who says words don't hurt hasn't seen my scars.

Much love to all of you xxxx


P.S. Kayleigh hun please come back
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Old 27-03-10, 12:43 PM   #42
Blondie
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Default Re: Sad Pregnancy News

Moderators,I support Suki,Dublinmum and Jaqueline in requesting this.Everyone is entitled to an opinion and freedom of speech,but people should become members first.
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Old 27-03-10, 03:01 PM   #43
hdauk
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Default Re: Sad Pregnancy News

Dear all, having considered the matter of people not registered on the message board posting through others, and bearing in mind the approval process required to become a member of the board, I have taken the view that people cannot submit posts on behalf of others in future.
If there is an occasion where this is appropriate, then the post should be made through a moderator.

Cath
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Old 27-03-10, 03:12 PM   #44
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Default Re: Sad Pregnancy News

Ok, I'll bite.

(I know I said I was going and I will; I've just been watching this thread develop. When it dies down I will take a sabbatical.)


Yeah, I'm gunna defend Trish, but you knew that didn't you? Nobody seemed to mind too much when I was passing on the benefit of her wisdom and experience; one or two comments but nobody said she shouldn't post. Now, when she gives her opinion that people don't agree with, suddenly she shouldn't be allowed to post via me. What next? Perhaps people want pasnthru banned because they don't agree with her opinions or the way they are put across? Maybe I should be banned for aiding and abetting an ex-member? Maybe we should ban Cath for not responding in the way we want? Where does it stop? It all gets rather silly and unnecessary.

Blondie, Trish was a member before for a number of years and made lots of contributions in various ways to this forum. For personal reasons she decided not to be a member any more and I agreed to pass things on for her as and when.

And I wish people would actually READ what is written and not read what they want into peoples words - it would save a lot of heartache and mis-understanding. And by that I mean everyone on both sides of this discussion. When you actually read what is written you see that a lot of what people are accused of saying wasn't actually said. Pasnthru for one is widely mis-understood and mis-quoted. My words are mis-read and mis-interpreted. READ the words; digest them and reflect on them. NOBODY wishes ANYBODY on here harm or ill-will. I find it disingenuous to suggest otherwise. All there is are differing opinions about an emotive subject.

We are all fighting the same daemon; despite disagreements like this we will at the end of the day all support each other because no other ****** will.
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Old 27-03-10, 03:14 PM   #45
DH
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Default Re: Sad Pregnancy News

Cath, thanks for the decision. I'll not post further.
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Old 27-03-10, 03:42 PM   #46
Blondie
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Default Re: Sad Pregnancy News

It's because I have no past knowledge of the group,or met anyone here and I have no loyalty to any member that I can take the view I can.I have no bias.I am not taking sides with anyone's comments either,it's freedom of speech and whether I agree or not with what was said between group members is irrelevant.I feel any past member who uses a current members position to post is unfair.I would say this if Matt,Jaqueline,Dublinmum ect had done this.If a past member wishes to comment then they should rejoin.Simple!
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Old 27-03-10, 06:30 PM   #47
rdsst
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Default Re: Sad Pregnancy News

I have read this thread with great sadness. Cath is right the question of having children will always be an emmotive issue which will result in a difference of opinion.

When there is a difference of opinion on the board - in this case whether it is right or wrong to allow someone (Trish) to post through another member (DH) - I do wonder why members of the Board expect instant action from the Moderators. As far as I can see this issue arose yesterday (Friday pm) and over Friday night and Saturday. I do think it is unreasonable to expect the moderators to take instant action as was requested in the following post:

"Moderators!!
Please could we have the courtesy of a decision from you about this.
If you are reading this thread and watching it like you are then you cant ignore what is being asked of you.
It is only common courtesy to at least reply in one way or another".

The Moderators are our RCAs. They do a good job and have much more to do than sort out differences of opinion on the MB. I for one want my RCA to concentrate on his/her RCA role firstly. I appreciate so much the time Cath and the RCAs spend in the evenings and weekends checking the board (I assume that this is done in their own spare time). I just wanted to say thank you and I do not like this criticism and demand for immediate attention . I believe that the Moderators are always courteous.
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Old 27-03-10, 07:13 PM   #48
just1moreperson
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Default Re: Sad Pregnancy News

I was in London today for a meeting to discuss the making of the HDA youth website. It's coming along nicely and we spent a good 4 hours discussing every little detail today, as the info has to be right for young people looking for support and trying to understand HD.

Unfortunately Cath and Bill missed a lot of it dealing with this issue on the message board. It would have been nice to have their opinions on some matters today but it wasn't to be.

There's thousands of young people out there living in HD families, whether they're at risk or not, they need support. How about we focus on giving them that support and educating them on HD, rather than moaning amongst ourselves over decisions no one can change.

Lets focus on doing something productive to the cause, for our families and for our community.

Tc, Matt.
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Old 27-03-10, 07:38 PM   #49
jaq
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Default Re: Sad Pregnancy News

Sadly any child born into an HD family is not going to have a 'normal' life .



They will lose one parent prematurely and may go on to lose siblings again prematurely.



Even without the gene this has a massive impact on ones life .



I can't say I wish I had never been born beacuse I was and if I hadn't been I wouldn't have known about it . All I can do is reflect on the cards that being born into an HD family have dealt me and everyone's hand will of course be different which I think will have a massive impact on thedecisions they make.



HD was in the maternal line and mum died when I was 12 my sibling 6 . I have not been tested but am at present ok but I do not have a mother and have very few happy memories of my mother beacuse she was of course symptomatic with HD when these memories were formed. I dread mother's day ( glad it has passed beacaue I don't have anyone to give flowers to or a card and haven't had for many years) . Mum was not there when I got my O level results or more importantly my degree . We have not shared lunches, laughter and tears we have not discussed poetry, literature or love and because of this my life has not had the relationship that others are so lucky to have .


Becuse I did not have a father prepared to care for his HD positive wife this job was left to my grandmother and without her I can't even bear to think what my life would have been like as she managed to cling onto life despite losing her husband and both children to HD . She died when I was 18 and my sibling 12 so I took on guardianship of my sibling with out finacial or emtional support that a decent father may have provided.


I now sit heartbroken as my sibling who I educated , saw graduate deteriorates as Hd begins o take its inevitable toll . I feel massive guilt and it is not even my child but perhaps parenting a 12 year old albeit badly when I was only 18 has impacted on my decision not to have children . So I have no family HD robbed my maternal family and my fathers lack of care any paternal family and if I don't develop HD I will died childless and alone and that will be that . I have surpressed the 'urge' to have children and am probably very bitter for a variety of reasons .



I do however think the drive to have children for any one these days is part of a wider debate as we live in a society where having children is celebrated above any other achievement be it education etc, etc. Like people have said PGD and any IVF treatments are massively expensive and in an overstreched NHS there may even come a point where funding could be compromised between funding new and expensive treatementss for diseases such as HD or providing people with the science to have children.



Jaq
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Old 04-04-10, 12:04 AM   #50
cmiz
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Default Re: Sad Pregnancy News

Wow, what did I start? Maybe seeing as though I started it, we should end the thread here ha ha!

Firstly we did find the strength to go ahead with our decision unfortunately our little girl is now with her great grandma and not us. As I said this was the hardest decision of my life, and as I said in the original post it was a decision that I believed to be right, but I totally respect that other people may make different decisions, as I am sure we all do.

You'll notice that I put a "ha ha" above, because even throughout what we have been through this past few weeks, I feel that a sense of humour helps greatly. I hope that I can come on here and discuss how I feel, and enjoy heated discussion, and light hearted banter. I have no doubt that you people on here will always be here for me to share my thoughts with, lets not get at each other, its the HD that is the enemy.

Myself and John laugh a lot we have to for our own sanity and to ensure Oliver has a normal childhood. He will see his dad go through the horror that is HD and he is lucky that he has a loving family around him that will (not shelter him from it), but support him through it.

I understand that this is a very emotive subject, and I'm sorry that this thread has caused some of you to be upset. I am quite a strong person, I take things with a pinch of salt usually, but can understand how things people put can upset others. I don't think anybody should feel guilt or regret about any decision they have made. Life (especially with HD in it) is too short for guilt or regret.

This is still very raw for us and I can still cry at the drop of a hat thinking about what I have just done, and in the back of my mind I think about how unfair it is that I cannot look forward to the birth of what should have been my beautiful little girl, but then I can also sadly smile as I think screw you HD, you won't get us down and you certainly will not win!


So, lets end it, lets spare a thought, make a toast, say a prayer, which ever works for you, for all the tough decisions that affect us all and our children or unborn children. Love to all of you out there.

Claire xx
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