Huntingdon's disease

It's not up to us to make judgement s on other people's lives.

If the woman chooses to make this public then judgements will be made

How very unkind of you.

To some extent it depends on what support she has but the child will have to witness her mother’s decline, especially once he/she realises they may go through the same experience.

Sad situation all round.

Do you feel the same about other genetic conditions or just Huntingdons?

I know of a family in which their is a filial history of a degenerative wasting disease, with resulting blindness and very premature death. They knew this when they had their first child, hoping that he/she would not be afflicted. Sadly he is and now, at aged 9, he is completely blind, immobile and is not expected to live beyond 10 years of age. They've gone on to have 3 more children, all of whom have the same terrible disease and are all in various stages of blindness and immobility. The community has held many fund raising events so that they can have as much practical support as is possible and, whilst I have also contributed to that, I have wondered why, having seen the devastating effects of this illness, they have risked the lives and well being of 4 very young children. But I'm not in their shoes and so I don't know the answer.

What a difficult decision to make - the poor woman.

We don't know the circumstances, though - the woman may have religious or ethical reasons for not using contraception or termination of pregnancy. Also, research into Huntingtons is ongoing, and there may well be a cure before the unborn child is affected - it usually strikes in middle age, I think.

I don't think that anyone except the woman and her husband/partner can comment, really, but I wish them and the baby well.

Thank goodness I was not in this womans situation. If I had her condition I would have decided not to have children. Can't speak for anyone else though - it is a very personal decision. It is not just about a womans freedom of choice it is about the huge risk she would be taking and the devastating illness she may be inflicting on her child. However I recognize it is her decision to make.

So hard. I just thought that this might be setting in train many many people who might have to go through this very distressing disease; their child will have children and so on, until this one decision has impinged on the lives of many.

I have to say that I would not remotely have contemplated bringing a child into the world to suffer so, both by watching what happens to his/her mother and then knowing it will happen to him/her, and then their actual suffering.

A good case for IVF I think - only an embryo free of the disease would have been implanted. I know, I know....eugenics at work. But it is done all the time now.

Huntingdons is utterly grim - not just the physical problems but the mental. Having recently lost my OH to a degenerative disease that has both physical and mental effects I know only too well what lies ahead. I would wish it on no-one, least of all a loved child.

I'm thinking the woman thinks her life is valuable and worthwhile even with her diagnosis. Therefore her child's will be too in spite of potential challenges. Hopefully the baby falls on the right side of the 50% chance though.

I believe they already know the child will have it, if I have read it right.

I do not doubt the value of this woman's life; nor of her child's. It is the inevitable suffering that concentrates my mind.

It's complicated. I don't know a lot about Huntingdons itself so that might affect my thoughts, but I also know that sometimes conditions are found later in life that couldn't have been known in advance and we all suffer in some way. I'm a believer in living your fullest life in spite of challenges.

If I knew I had such a genetic condition I would think about using a donor egg or IVF to screen it out. However having any child is a gamble. Serious conditions we couldn't have predicted can emerge later. This happened to one of my children. Would I still have had them? Are they and their lives worthwhile even if they have more to overcome than some others people? Yes to both.

Then again, I've also seen the horrible impact on teenagers and young adults of going through the death of someone close to them. That would probably give me more pause over whether to have a child knowing my own life is limited than anything else would.

Life and reproduction is a gamble. The difference here is that some of the path ahead might be known. It might be one of those situations where we don't know how we'd feel unless we have to live it. Even then, we might all make different decisions.

I think this is the family in the OP. www.bbc.co.uk/news/stories-57430859

I must admit, I’d make a different choice from them, because I would find it too hard to tell a child that they might face an unpleasant disease and an early death. I know treatment could become available but I’d be making a decision on what we know today.

I hope all turns out well for them, though.

JaneJudge

Do you feel the same about other genetic conditions or just Huntingdons?

That sounds combative Jane. Intentionally or not? I can’t speak for others but I feel exactly the same about similar cruel diseases that offer suffering, poor quality of life and no hope. As for other genetic diseases it depends what course they run so can’t all be lumped together. I think individuals should be allowed to choose their own fate.

There was a similar situation in the Kent village we lived in. There was a large extended local family where the boys all contracted a wasting disease and it was incredibly sad to see them watching other children play whilst they were in wheelchairs getting weaker and weaker until they died in their early teens. The parents had a strong desire for a male child and presumably hoped to somehow defeat the odds.

Playing Russian roulette with a child’s life - unforgivable

I suspect when someone hears that they shouldn't have a child with a particular condition they have themselves, all they hear is, "You should never have been born. It's not worth it or worth your suffering." Maybe they don't feel that way? Maybe they feel glad they were born and that their life is worth it, even if it is short or difficult? Or they think the few years of suffering they will have doesn't outweigh the decades of good life they have before that starts?

I'm sure if this mother felt it was that awful, she wouldn't have a baby. I'm not saying it's the choice I would make, just seeing another perspective.

Sandycat

Playing Russian roulette with a child’s life - unforgivable

Every life is Russian roulette. You never know what will happen when.

It's difficult for some other people to accept something like that as they worry for the child but it's also hard to deny ones reproductive drive. People also have children when they are deeply unsuitable as parents and it's 'obvious' to others that they will damage the child maybe through physical and psychologically abusive behaviour. Hard to judge something like this. It's possible to have PGD and select an embryo that's unaffected by Huntingdons.

Please do not judge.

So many diseases are/have been horrible and devastating over the years. It does not mean those people’s lives were horrible and devastating to them or the people who love/loved them.

The father, in this case says:
Heather is lovely, and her mother was lovely - and they both had HD. There is a 50% chance our baby will have it too, but I think there is a 100% chance the baby will be lovely and we will be happy as a family.

This is more than can be said of many families.

Jess, this family was unable to have PGD. They also didn’t want to have to say to a child that they only wanted them if they were ostensibly “normal”.

www.newscientist.com/article/dn3493-gene-therapy-may-switc…

Please don't judge.

See above. Gene therapy & other treatment these days changes what we learned in the 20th century changed.

No-one ever knows the entire circumstances of someone's life.

I hope this is no the person I know who is in this situation; they are the same as any new mum & need to be supported not scorned.

My friend has this horrible illness her father had it.
She had her eggs tested and had two which where free of it. She had twins a boy and a girl and they are all fine.
My friend is still working as far as I know. Her sister was tested and she was negitive.

No-one has the right to judge. Having to live with the knowledge that you have this cruel disease, is unbearable.

Unknowingly, I was/am the carrier of a defective gene and the knowledge that it has affected one of my children's health, has left me wracked with guilt. The other two refuse to be tested.
That poor woman doesn't need our criticism, she has enough to contend with.

I guess people are judging because a child is involved. If we read about a child being badly treated we would be sad and angry and want to change the situation