Huntingdon's disease

It's a terrible situation with hard decisions to be made. I can only speak for myself - if I had an illness which was hereditary I wouldn't want to take the chance that children could suffer. Ordinary life can be difficult enough without adding a dreadful disease to the mix.

A family friend had this. He lived well into his eighties and his symptoms were slight until very late in his life. Although some of his behaviour might have been the result of his illness it really wasn't so extreme it stood out. I know he was very lucky. This child obviously has two loving parents one of whom may at some point become ill, the degree or severity of her illness it is impossible to predict. This is more than a lot of children have. I wish them all a happy future.

To be fair to the couple though, it looks like they did seek medical help to eradicate it from their gene line. In her country (NI) she was told she too overweight and obviously an ethical decision was made in Denmark (or was it Belgium, I've been out since I read the article) because she was already showing symptoms herself.

I do not think the woman is selfish. The 'new' gene breakthrough with the vaccine can now be looked at how this and other diseases can be eliminated. This is a marvellous breakthrough and this science will change our thinking of this and other diseases.

I do not think that saying that you would not wish your child to suffer is in any way negating the value of this lady's life or anyone else with disabilities or illnesses.

As well as the physical effects, this disease can be devastating mentally - I would not want my child to witness this.

This woman needs love and support through her decision to have a baby.

Persrsonally, knowing much about this disease I wouldn’t have a child, but let’s not be critical or judgmental unless you’re walking in her shoes you can never tell.

It’s a dreadful disease which goes on for ever through a families genealogy. There’s also a high teenage suicide rate. Dreadful

I think the odds are too great to take the risk. This disease will continue to be transmitted until gene therapy helps or carriers do not perpetuate it. I have nursed people with this cruel disease so I know it's effects.
JaneJudge I would feel this way about any genetic condition if I knew I was a carrier. Life is very unfair.

PippaZ, I think it is Huntingtons. Unless there's another disease out there that I don't know about.

Isn't it Huntington's disease? If that the case doesn't the error suggest little knowledge of the disease? I am aware of someone who had it but was not affected until he was in his fifties. He was pretty much incapacitated within a few years of its onset. Who can judge the value of the good, happy, useful life, contributing to society he had up to then, against the 24 hour care he now needs? I wouldn't know where to start.

Kamiso, no I wasn't being combative at all, I just wondered where we draw the line. I have a genetic condition in my family but I wasn't a carrier, had I have been I may have made different choices wrt having a family (although options are available now which were not 20 years ago)

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

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.

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.

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.

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”.

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.

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.

Sandycat

Playing Russian roulette with a child’s life - unforgivable

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

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.

Playing Russian roulette with a child’s life - unforgivable

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.

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.

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 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.

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.