Of course a person would rather be alive and not at risk.

But, on the other hand, if you are looking at it that way - would a person rather not have ever of been on earth or have been here at risk?

I choose to try to stay positive and live positive - HD is not good but there are many other illness/injuries out there that are not good at well.
That doesn't mean they would rather not be alive.

I have a SIL who I have had this conversation with. Her sister died of breast cancer at 32 and she told me she would rather have lived the length
of time an HD patient might have than to have gone through what her sister went through and died at the early age.

I am not trying to change anyone's mind. I would just like to live positive and many times the posts on this board are depressing.

I choose to look at a glass half full rather than half empty - maybe that is the difference. No ignorance.

I don't think the issue is would someone who is already here rather or not be here. given the choice to bring a new life into this world with the assurance it is HD free vs a new life at risk. Knowing what I know now, I can't understand how a parent could choose the latter. not imposing my will or telling anyone what to do - these decisions are personal. as the mother of 2 at-risk kids I just can't understand it...

Our 3 kids were already born when we were blindsided by HD. There is not a day that goes by that I don't worry about my kids being at risk. It's an awful feeling to know that if we had known when we got married we could have prevented this constant worry. I don't understand why someone would choose to knowingly put their children at risk.

I find it funny that Kathleen started this post and has not responded to anyone.

Kathleen,

I haven't been on the board for a long time as I've been busy but after reading your post I have something to say which won't change your mind, hopefully it will make you stop and think about PGD and people's choice to use it.

I had to watch my 2 small boys go through Juvenile HD. They had seizures constantly, they lost the ability to walk, they lost the ability to be understood, one had to be peg fed as he choked on anything in his mouth including saliva, they both became incontinent, they both ended up in wheelchairs, they both had a lot of pain, they both had constant shaking, neither of them slept at night, I had so many meltdowns during the last 15 years as I cared for them and my husband.

My eldest child died at just 7yrs of age in my arms in hospital - do you know how gutwrenching that is? My youngest died suddenly one morning at age 11. Can you imagine getting a knock at the door and being told your baby has suddenly and unexpectedly 'gone'? If your reasoning behind PGD "killing a potential life" is religious then tell me why your God allowed my children to suffer so much. If I could have had them through this method I would have but it wasn't available and testing wasn't available for my husband at that time either.

Now I am watching my husband go through much the same as the boys except he has the adult version of HD and thats not pretty either. So by making people feel guilty using PGD you are doing so without having seen a child suffering so much.

Nobody knows when life actually begins, everyone has their personal opinion and we try to support each other on here. However we don't make people feel guilty for wanting a better life for their children. As someone said, if HD isn't that bad then why do we need a cure? Very wise words.

Buddybird

That's a strong post, buddybird. I'm so sorry you have seen so much suffering.

Buddybird, I'm so sorry. What a devastating story.

I've had relatives die as young as 16 and up the other end of the scale die in their late 80s of HD.

People dying late in life from any disease is a shock and horrible, but we can comfort ourselves with the knowledge that they probably had good lives and plenty of time to grow and live and love and had years and decades when they thrived before the disease took hold.

If all people with HD didn't develop it until later in life and had could live to be 60, 70, 80+ and never encounter the worst symptoms I'm sure there would be more HD families who would take risks with having children and gambling with the HD odds.

But to hear your story brings home the tragedy of this disgusting disease and they way it takes hold of people of all sexes and all ages, no matter whether they are 8 or 80. We can't let this continue when we can do something about it, especially not when it affects such young children and rips apart a family in such a tragic way. I hope nobody is telling a story like yours in generations to come, but I'm afraid they will if we don't all resolve to do everything we can to bring HD to a halt.

Thanks for your replies,

I think the point I am making is would people rather "kill" a sperm & egg which join together or watch jhd kill their little child quickly. I just wanted Kathleen to think about people opting for PGD. I still feel lucky I had the most gentle, kind & loving husband who is now badly affected by HD but still has those personality traits. I was also lucky to have such gorgeous and loving boys who spent a lot of their time cuddling everyone and in return they brought a lot of love into their short lives. Through them I have met lovely people who cared for them and now are my friends, including their teachers and people at their school where I now volunteer with their teachers.

We shouldn't judge decisions others make, support is the most important thing for people in HD families.



Buddybird

I like threads and responses that challenge me to think, without personal attacks on someone else's opinion. I read along as everyone made their responses each day and thought about them. Then today, I went back and re-read Kathleen's original post just on it's own and just exactly as she posted it. I didn't find it offensive and I also took it as her just expressing how she lives "her" values. (maybe others had more of a reaction to the "subject/title" ) or felt it was an attack on their having the right to choose differently.
I certainly didn't get upset over her posting how "she" value's when life starts (since we all admit there are differing opinions held on when life actually starts). I got from her post that "she" believes that life begins from conception and that it is not within her judgement to decide to extinguish that life at any point after that. Personally, I also believe a decision like that is above my paygrade. I can respect her for voicing her belief in that to others.
Kathleen, I feel it's okay to post your opinions just as everyone else did in response and I don't think Kathleen had to be drawn back in to the thread to defend what "she" believes and stated in the first place and she did state it in a respectful way (in my opinion).
It was also thoughtful for some to post their very personal experiences in their lives and the lives of their loved one's who have suffered dearly through this disease and death. Watching your loved one suffer is the worst pain I think I can imagine, more especially your own child.
"I" also believe that life starts at conception and "I" believe for myself that I would have to choose another option to be a parent of a child if I felt I did not want to risk passing the possibility of this disease on to my biological child or I would have to make the unselfish decision for myself of being childless. The biological drive to procreate can be very difficult to resist, it is a drive and yearning that comes in most humans and animals. I can also say that I am past the child bearing years and have grown in my life and I do realize the biological and emotional urges to procreate are past me now and I do remember when my life's decisions maybe would not have been the same when I was younger. I hope I still continue to grow thoughout life and live my life the way God leads me to. Most people want to do the right thing (whatever that is to them). Maybe in the future those that want to have children not at risk will have the option of knowing the risk to the child even before conception.



Edited 2 time(s). Last edit at 06/02/2011 09:30AM by LizzieAnn.

Buddybird, Your post was so very powerful . . . I'm so very sorry for all the suffering and loss that you and your family has had to endure. I couldn't stop crying reading your post, because I felt every word you wrote . . . there are just really no words . . . Michelle

Personally, if I was at risk and my mum could have made a decision to have treatment like PGD that prevented me from having HD I would tell her to have that treatment.

I hate posts like this because although I generally agree with the sentiment, it comes off as overly preachy and causes people to attack the belief. I don't like having it thrown in my face that I had at-risk children, and a post like this just invites that criticism.

It's a large part of why I try to only visit the threads that deal specifically with treatment (i.e. new drugs, therapies, etc.)



Edited 1 time(s). Last edit at 06/07/2011 10:54PM by jsr.

Apologies if you were referring to my post. That didn't mean to offend anyone - If you read the posts towards the beginning of this thread I just don't see why people should preach to those who are interested in PGD about how it is wrong etc Everyone is different some people are against PGD, some people are for PGD, some people couldn't have it for whatever reason - everyone is different. I don't think there is a right or wrong answer but people are opinionated. My husband once said to me if my mum had PGD then I wouldn't be who I am today which is very true. It's just the arguments about pro life that upset me. Having PGD is not always teh answer anyway. From what I am told PGD carries some other risks too. Once again, I did not mean to cause offence.

I don't think anyone throws it in your face. It's probably that you are touchy about what you chose. That happens a lot on this issue. People get defensive right away the second someone ask another to consider not to risk having HD at risk kids. It's hard to state one opinion about it, and not put another on defense. Especially if the deed is done. Just remember, this is advice to FUTURE people, not a judgement on those of the past. And the advice comes from judgements they made about what they themselves have done or didn't do. It's not intended to 'spank' you personally. Try not to look at it that way. We all feel we made some good and poor decisions about things... sharing the info can help the next person. It can also help you understand what you did yourself and why. And even if you might do it differently, it doesn't mean you need to feel guilty. It just means we grew a little over our younger selves.

I was commenting on the original post

Oh..

I think there is a bit of a problem on this thread, that maybe i can explain what i see happening. People are upset about how kathleen said things, not her personal stand on this issue, but how she said it. This is what she said:

"The first spark of light is ignited when the sperm enters the egg. Who are we to say who is to live and who is to die"

The problem was, she didn't say her opinion is such and such, she said the first sentence as a blanket preachy statement, that didn't say, i think such and such. No we're not being picky, it really came across the wrong way. And second, she preached again by saying, "who are we to say who is to live and who is to die", instead of being courteous and saying, who would i be to say who is to live and who is to die. I think we have gotten pretty good here at accepting each others thoughts on this subject, when things are not done as a personal attack on people.

The second big problem is this. Some have looked at her post and not seen much harm in how she said this. The problem is this. On another thread she called people that do this baby killers. Some may not realize she did that, and so don't understand why some of us got upset on this thread. The problem is, some of us did remember her saying that, and so we transferred her thoughts from her other post to this one, which i did also, but just wanted to explain this to people. Hope everyone is ok, and realizes most of us are not attacking just for the sake of attacking, but because, well, for myself anyways, i was upset at how many dear people here could be hurt so bad. But as for our individual opinions on this, i think we all respect and care about each other on this issue

PS Eric...Oh LOL



Edited 1 time(s). Last edit at 06/08/2011 07:23PM by Barb.

When I first saw this site I was so excited to read everyones bio. Who feels what about what and their personal experiences. Well this is what my post was about. My personal experience. And my personal beliefs. I didn't mean to offend anyone. This is just how I came to the decision to live my life and deal with having children.

deleted



Edited 2 time(s). Last edit at 06/16/2011 07:14PM by Barb.

Wow, I've been away for a while, so I hadn't read this post. Nice original post to read for someone who is now 8 months pregnant with a PGD girl! I honestly hadn't thought about how that would make me a sinner in some people's eyes...

All I have to say is, no matter how harsh those people judge my husband and I, I couldn't care less about what they think. I will take responsability for my decisions only if my daughter decides to hold me accountable for bringing her into a world where she has to see her father get horribly sick. She's the only one that, from my point of view, will have a say in all of this and the only person I will respond to for the decision her father and I made but that her father will probably not be able to respond for when once he gets HD.
I honestly like it better when people here simply share their experience and support each other no matter what. This shouldn't become a place where it's ok to jugde others, no matter how now the original poster is trying to deny she was passing a judgement. But maybe it's just all those hormones that are making me feel personally attacked...

Gladly, nothing will ruin the beautiful moment my husband and I (and our families) are enjoying right now. And when the time comes, I'll be glad to share the news of our baby girl's arrival with the wonderful people on this forum who I have come to love and respect so much.

Hey luz, you're absolutely right, and if it's hormones, then i must be preg too then LOL. Nope, you, and many others here too, are the reason i was upset too. So glad to see you! Wow, only one month to go, wishing you the Very best



Edited 1 time(s). Last edit at 06/16/2011 07:15PM by Barb.