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. Clever scientists can look at our DNA and say, this person will develop HD. But they can't tell you how much joy and life that person will experience and all the good that person will do in there life.

So on the basis of DNA only, the decision is made to discard a precious miracle - new life.

I choose to have my daughter naturally and leave her DNA in Gods hands.

When I found out that my father had HD, someone asked me if I resented him. NO! How could I resent him for giving me life. And I wouldn't change a thing! This is my life and I will make the best of it.

You are entitled to express your opinion here, especially since you have done so courteously. However, I disagree with you that PGD is not pro life and I disagree with the part where you say you left your daughter's DNA in 'God's hands.' We all have to take responsibility for our own choices. I hope your daughter will never develop HD but if that happens, I would hope you would not blame God.

I think the life outside of the womb is much more important than a few cells that are growing. We are hopeful that there is a cure to HD but in the meantime we can try to iradicate the disease by not passing it on. I hope your daughter is healthy but that is a big risk to take with someone else's life. I say this as the mom of 2 at risk children who wishes she had done things differently to ensure that my kids are HD free.

Kathleen, can I point out that if God gave us the tools to identify HD in an embryo why would he prohibit us from using that knowledge?

I'm pro choice myself and fought for the right of choice for myself. I have no idea why the right to lifers all of a sudden are around again as religion is vastly less important than it was when I got married and there was stigma attached to the birth of every bastard born by the roman catholic church stating the parents legal state of marriage the time of the child's baptism all the way back to the 1600s in the Drouin which I have use of on ancestry. Only the catholics wrote the state of marraige of the parents for each child, the protestants had spinster of minor or major age for marriage and rarely the parents which makes genology much harder. When I grew up in Quebec the gov took all the children of unmarried parents and put them in the duplessis orphanage. Dad used to say Good enough to sleep with good enough to marry to his unwed mothers.
The morals of the american or canadian family folllow media and the old people are shocked by the number of unwed mothers in the next generation especially kids in high school.



One of best friends did the mormon genology research. She told me that they looked for births and counted back 6 months and found the weddings.
So not that much has changed about how you get pregnant but they did get married before the child was born.

As I see every girl is a princess on her wedding day which cost ridiculous amount of money which no one has and the marriages don't last too long because they don't know that life is hard.

The devil made

HD



Edited 1 time(s). Last edit at 05/26/2011 02:07PM by dustyblues.

I'm assuming that you have witnessed a person suffering fom HD choking continuously thrashing around with bruises unable to look after themselves obviously in pain and this going on for years and years.... and you think thats ok?

You dont wish to interfere with Gods will. Well if you walk out in front of a car and some one pills you back would you say they had interfered with Gods will?

If you have a heart attack do you wish to be left to die as its Gods will and you dont wish for modern medcines to save you?

It doesnt take long for the previous joys of life to be faded memories.. all that remains is constant suffering.

As we all know in a democracy we are entitled to our own opinions but frankly I wish never to see anyone suffer like this again.... and if PGD is a way around it at the cost of a few cells.....

I really dont think you have a valid argument.... GOD or no GOD.

I wish I'd not come onto this site now this evening as your thoughtless/flighty message has really upset me.

Amen Dusty and Lorraine. My feelings are the same as yours.

Actually i am upset about this post too. And i don't think it was courteous. If she had just posted that she was pregnant, and that this was the choice she was making, and hope we can support her in that, i would have been all for that. BUT, i am very upset at the preaching she did. There are many people here, who have made that Very difficult and Heartwrenching choice, of whether to abort an hd positive baby, and i'm sorry, but those people must be very upset right now by the preaching. It's not right, to come here preaching at us, walk in our shoes, and show love and support, and give a different opinion when appropriate, but don't just preach, that isn't love. And i do wish you the best for your baby, but that is difficult to say now, after what you said and how you said it. But, i also understand that she is new here, and it takes time to understand how to mature onto the forum, i certainly had to go through a learning curve when i came on too.



Edited 3 time(s). Last edit at 05/26/2011 04:37PM by Barb.

Kathleen, I'm just curious to know if your dad has symptoms and at what stage is he? I only ask this, because way back when we found out Ray could have HD and when he first developed symptoms, we already had our son . . . Ray didn't know that his mom's disease was genetic, because she died when he was 12 and his family didn't really talk about HD . .. there was no internet then, so it's not like he could have googled it to find out about it.

Once we were aware, we decided not to have anymore children, but honestly at that time, I had NO IDEA how very SAD & HEARTWRENCHING HD is/was. I love my son so very, very much (like most parents do), and now my heart is in knots and breaks over and over thinking that our Joey could have HD (I have to believe he is okay, just to make it through each day . . .it just CAN'T be him). . . it is the most overwhelming pain in your heart that you could ever imagine . . . because now I KNOW what HD is and does. Watching Ray slowly deteriorate over 15 years was so incredibly difficult on so many different levels . . . emotionally, psychologically, physically, etc., etc. . . . I'm not saying how I feel about PGD, that's besides the point, but I think that the decision to have a child when you know they could get HD should be taken a little less lightly. It's a huge decision!!!!!!!! HUGE!!!! I've cried myself to sleep in desperation many, many times, just hoping and praying, that our little boy (who's 19 now) does not have HD. There's not a day that goes by that I don't wish I could take the worry away from him . . . he saw and watched his dad suffer so much and for long and he's scared, very scared! He's well-adjusted, thank God, and goes about his days with a positive attitude, but he told me once that he just wished sometimes that he didn't have this 'weight on his shoulders' . . . yet, he's too scared to test, because he's afraid he'd 'give up on life' if he knew . . . that's the reality that our children will have to face . . . so please put a little more thought into your decision, that's all I'm asking . . .



Edited 1 time(s). Last edit at 05/27/2011 03:46PM by mjdelcon.

I chose PGD.

Your opinion is your own and I have no problem with your expressing it. But for the sake of others who may be considering PGD, I will also present the result of my own soul-searching.

No one has proven whether life begins when the sperm enters the egg, or when the embryo implants in the uterus, or when the heart begins beating, or when the child is born (or somewhere in-between). And it is not wise to base important decisions on something that is unknown.

When searching for biblical references that might relate to this matter, the only I could find referred to life beginning "in the womb". The entire IVF and PGD process happens outside the womb, before the embryo is transferred into the woman's uterus. So biblically it is impossible that life would begin before the embryos are transferred into the female. (And therefore, according to the bible, life begins after the IVF/PGD process.)

Ultimately, I made my decision based on what I would do if I were already a parent. I was fortunate enough to have the knowledge and awareness to be able to choose PGD and protect my children. And I thank God for giving me the opportunity and medical advancement to do so.

When I did PGD, several wonderful things resulted: My healthy twin girls were born, and all of the gene-positive embryos were donated to HD research. Nothing was "discarded".

Those gene-positive embryos may contribute to finding the cure that we all are hoping for.

Stacy

www.HDFreeWithPGD.com

Hello all! I agree with all your posts. I too am insulted by the original post. This is the second one I've seen from Kathleen. The first was in response to a HD positive woman who was trying to decide whether to have healthy kids or not have children at all. She stately clearly that she would test the embryos and had done all the research. Her reason for posting was to get feedback on whether it was fair to her yet-to-be-conceived children to have a HD mother and how that would effect their lives as her disease progressed. I admired that she was thinking of things from their perspective and reaching out for advice as she obviously deeply wants children but is trying to think this through from all angles.

So, I didn't think it was appropriate that she received a response telling her that it was wrong to test the embyos.

It is not only inappropriate, the thought of not testing in this day and age is SELFISH pure and simple.

Jduff you could also argue that any Phd that knowingly brings kids into a situation of a parent having HD is also selfish. Growing kids up in an HD life is hard, it is not perfect and certianly not what I thought my family life would be. My tween daughter is suffering with the knowledge that she is at risk, that her dad is dying and no one in our family is happy living with HD. My husband doesn't recognize his symptoms to him he is fine and he should be able to work and drive. I am the only one holding him back.

I have one daughter through IVF before diagnosis and one (miracle) naturally concieved child after diagnosis. I wouldn't change having my kids, because for purely selfish reasons that are the light of my life. BUT if someone sat me down twenty years ago and really explained to me what living with a pHD was like I might have made different choices. That is my advice to anyone who is asking, why bring a child into a sitation like that, be the best aunt and uncle you can be, become a big brother or sister. HD sucks and limits choices and freedoms and wreaks havoc on family life. Great that you can have a Phd but why go through all the care of doing that and expose them to some potentionally hazardous and at a minimum unhappy situation to loose a parent at a young age.

I know that young people won't pay attention because the drive to have kids is so strong. To have kids inspite of HD is also selfish pure and simple.

In school we referred to such decisions as “ethical dilemmas” – where there is not necessarily one right or wrong answer and the answer you decide results from your views on morality and what is right or wrong for you personally (which partly results from your own individual life experiences). There are many many other medical ethical dilemmas – whether to assist with end of life care that will speed the death process, when to pull the life support etc. I have personally seen physicians at serious odds with the spouse of a critically ill patient over such decisions – with the spouse in tears and traumatized.

In terms of PGD and HD I think it is even more of an ethical dilemma as, unlike many other genetic diseases that PGD is used for, hd does not start right away, and many people value 30 + years of healthy life. This has more recently become a controversy too with genetic breast cancer, as they now have the ability to screen this out by PGD (some of you may have read about that). I have asked a number of HD patients, if their parents could have selected them out, so hd would not have been a part of their life, would they have preferred that, and I have been told no – they are glad to be alive. Hence, many people do value the “not perfect” life and many people with the hd gene are very glad they had the opportunity to live regardless.

On the flip side, the risk of not having PGD – your child will be at risk and has a 50 % chance of getting hd between 30-60 yrs of age (and there is a possibility that there won’t be a treatment by then perhaps) and there is a small chance (particularly if the father has the gene) that this could be passed on as jhd. You also have to live with the fact that the gene came from one of you.

Both sides could be argued about until we are blue in the face – that is how it is with ethical dilemmas and that is why they are called ethical dilemmas! In the end, each person has to make their own decision that is right for them.

Every since this original post I have been trying to figure out how to word my response so as not to offend anyone. I almost posted a day ago
but am glad I did not because I could not have done as well as the response that Kelver1 made. I totally agree with Kelver1.

I have had a neurologist tell me "how do you know a person with HD might not be the one to find a cure". I have had a director from a HD center
of excellence tell me they had one patient who was over 50 who now wished he would have had children. He told the director he had a wonderful
life and would not change his life.

One thing I have learned and continue to try to practice is "not to judge anyone". Everyone has different shoes to walk in and unless we are truly
in their shoes we have no right to judge. The only one who has a right to judge isn't here on earth.

I like this forum because we get everyone's ideas and opinions whether we agree with them or not. I think it is immensely important also because
there are many good ideas and we find out how certain medications/treatments have worked for others which helps the rest of us.

There are many wonderful people on here and without them I would be lost at times.

I am at risk for HD. For the sake of your own children, please take what I say as not an insult, but a constructive criticism in the truest sense of the word. You should listen to what I have to say because in my eyes you have not only sinned but done something that makes you unfit to actually be a parent. Im sorry to say this but if you knowingly pass on HD to a child that is child abuse in my eyes and you should be treated the same way as anyone else who harms a child based on a belief. There have been cases where for religious reasons people have refused medical treatment for fatal illnesses such as cancer and just allowed the child to die. This resonates the same way with me. It is a crime to sleep with someone if you have AIDS or another similar disease without informing them , and this is not really any different in my eyes. When god or religion get brought into the mix, religious people act like society is supposed to turn a blind eye to those who do destructive things in the name of God. I totally understand the dilemma of wanting a child and a normal family, but you chose an option for something you wanted. You could have not had children, or adopted if PGD really was out of the question.

My parents didnt know anything about HD. My grandfather had it but he was not a part of my dad's life so all of the people in my family are victims. The emotional burden of knowing I am at risk for HD has definitely compromised my happiness and any feelings of security I once had. My own optimism is minimal, and the thought of what could lie ahead for me is not something anybody should have to face.

Im sure at some point in your life you will utter the rhetoric of "I would do anything for my child". Well here is your chance to prove that. If you are doing this for God, you are worried about saving yourself. If PGD is a sin, then commit that sin and give your own soul for that child. There is no more cowardly and less Christian act than putting yourself ahead of your child and forcing him or her to possibly suffer for their entire life.

It honestly sickens me to think of all of the insignificant "parenting" you will do for your children. You have compromised the happiness, safety, livelihood, health, and well-being of your children for the rest of their life. Im sure at some point your child will pick up a something they shouldnt eat and youll tell them not to eat it, or in their teens theyll come home drunk and youll scold them for that. The reality is you just gave your child a lifelong game of Russian roulette and no amount of church or parenting will ever fix that.

I would only say "to each his own" as no one is able to judge someone else.

Everyone has their own opinions which is the way it should be but no one is above anyone else in their thoughts or beliefs or opinions. There is only one God and he hasn't posted here that I know of.

Many times I have refrained from posting, as I know others have as well, because of the backlash of posts possibly strongly against my thoughts
or beliefs. I do not mind the posts against my thoughts or opinions as I do listen - sometimes I change my thoughts due to these posts, other
times I do not but do not care for those who chose to judge myself or others when they know nothing of me nor have their walked in my shoes. I read and keep my thoughts to myself but this time I could not. I know this is a touchy, heated subject and one each person is very definite on what they think/believe but that is no reason to condemn people if they feel differently than someone else.

Life, in itself, is the most precious thing there is. I am glad all in my family are here (they are glad to be here also and have said so and have enjoyed life and still are) and I am glad all who post on this forum are here as well - those who have HD, those who are risk for HD and those
family members of those with HD or at risk. We all need to help each other and join together for a cure.

Having a child takes much thought - if a person wants to go the PGD route I am all for that. If they have their reasons not to I am not going to
condemn them for that as well. I have done "Significant" parenting even my children are at risk. None of my parenting has been "insignificant".
Of course, no one else knows that because they have not walked in my shoes nor do they know all factors involved!

Until recently testing for HD did not exist. I would suggest you read Katherine Hepburn "Me" to understand secrets especially in the case of suicide because the family was considered tainted, even if they were doctors and suffragettes and that was only depression at its worst, not HD.
My sister who did not get HD in the end spent part of every day worrying about
HD. As she was older she remembered our mother as an active intelligent woman and I didn't . Our other sister died of HD at 42. I also worried about it but I was busy .

Shar, you believe that life is the most precious thing there is. I believe that quality of life is the most precious thing there is.

Kelver, you said this .... I have asked a number of HD patients, if their parents could have selected them out, so hd would not have been a part of their life, would they have preferred that, and I have been told no – they are glad to be alive.

The mere fact that those HD patients could tell you their thoughts shows that they weren't in the most advanced stages of the disease. If you asked my aunt what she thought she couldn't answer you because she's been unable to speak, write or communicate for the past 10 years. Who knows? When she groans at me maybe she's trying to say 'hey, isn't it great to be alive!', or maybe she's saying 'please, let me die!'

All I know is that as long as there are people who want to take chances with HD and not stop it from continuing on to the next generation then this awful disease will still be around in another hundred years time. And that makes me very sad.

I personally don't understand not wishing HD on their worst enemy but it's ok taking a proactive chance of passing it along to your own child. Some exceptions to that is ignorance of the disease and it's affects. That happens, especially from the non-affected side of the family. but sometimes even from th affected side if they stay mum about it or various circumstances. But I can't pray for cures at the same time advocating passing it on. If it's not so bad why cure it? But it is that bad... and after watching it devastate my wife's family.. and watching it work on on the people here at the NH.. I will never advocate choosing to just taking a shot and hope for the best. There is no cure but there sure is prevention. Ask the same people if would would rather be alive and at risk or alive and have been been screened to not have HD and what would they say?