The Three Little Boys

Ever since i saw them on television its stayed in my mind and the parents must be living a nightmare.
All the scum thats walking around and these three little innocents are given a death sentence the parents a life sentence.
Life is not fair,hope the fellow in my pub who is always collecting for charity will pick up on this one and i will certainly remind him as these two parents need all the help they can get.
Maybe we could donate through FM but if not give your pub a reminder

what 3 boys ???

They are suffering from ALD a genetic illness Ed and although they are running around like normal young lads(the oldest is only eight)their life expectancy is very short
Victims can loose their speech hearing sight ability to walk and dont usually survive for more than a few years,in fact the oldest might only live another two.
Its genetic and was passed on through their mother so god only knows what she is going through
The film Lorenzo`s Oil was about ALD and Nick Nolte was the actor who played the father

You can't help but feel desperately sorry for families in this predicament it must be a living nightmare but I often wonder why parents who have serious hereditary diseases, and ALD is but one example, have children in the first place. I don't in any way blame the parents but I like to think that if I had one of these hereditary conditions I would be strong enough to resist the temptation to have children, I don't think I could bear the thought of inflicting that on a child if I had the choice. Not all people are aware of their gene defects of course because it can skip a generation, or more in some instances, but I refer to the ones that do know.

Does that sound harsh? I don't mean it to be but this thought always crosses my mind when situations like this are brought to the fore.

Heartbreaking reading.

No it does not sound harsh Graham and like you say she might not have known she had it in the first place.
When you read or see something like this it makes you wonder about religion or how fair life is.If there is a superior being he must have been on holiday the last few years

I tend to agree with Graham.

Having a child is the biggest responsibility anyone can have in their lives. If there is a slight trace of anything that could cause a problem with a child, then I do think the couple should refrain from having kids.

And the best way in my opinion is for the man to have the snip done.

When myself and my late wife decided to try for a baby, we thought a great deal about it. Did we have enough money for a start? Could we afford to give that child the best education, the best food, the very best that life could offer? I was adamant about this, he or she was going to get the very best.

At the end of the day and after about 3 years planning, my wife did fall pregnant. We were delighted.

Then my wife started having pains. She had to be taken to a hospital.

The pregnancy was ectopic and she had to have a full D&C. That means she could never fall pregnant again.

After that we decided to adopt.

My son Sean, who we got when he was 2 weeks old, has been one of the reasons I am still positive in mind and spirit today. Fishing has been the other thing of course.

My son's education - private schools etc (you call them public schools for some strange reason) cost me a fortune and has made me poor. But I couldn't care a damn.

He has become a top class person with a big earning salary in the City of London.

At least when I die I will be able to say with a clear concience: "Sean, I did the best I could, make sure that your kids have the best too."

Sadly even when the parents do know they have a heredity disorder, which is likely to be passed on, they don?t understand the risks involved.

A case in point was a family my wife once worked with, the genetics councillor said to them, after their first child was born with a disorder, there?s a one in 5 chance the next child could have the same disorder.

The family took it to mean they could have another 4 kids before it happened again.
Sad I know, but the medical profession has to learn how to put across in understandable ordinary peoples language the dangers.

It took my wife weeks of explaining to the family that what the GC had said amounted to a very high risk indeed of it happening again.

A sad case indeed. I seem to recall a case from many years ago of someone having Huntingdons Chorea which is almost allways fatal and hereditary. The medical profession came to the conclusion that all the people connected to the line of descent should refrain from having children and in a couple of generations or so the disease would disappear. Im not sure it worked because I think it is still with us and it is a big ask of young people to not have a family when its only a small percentage that contact the condition.

John, my son Karl had to undergo tests for X-LINKEDAdreno-leukodystrophy, as we found out that a close relative on her side of the family has the faulty gene(

I suspect the risk of passing these hereditary conditions on will in say 10 to 15 years be a thing of the past given advances in genetic science.Parents affected will be able to implant disease free embryos which do not carry the defective gene. On balance I belive this is a good thing especially when you see situations such as JL has highlighted.

Very sad.

It's easy to get wrapped up in our own individual difficulties. Certainly I have in the past, both as a single person, and when I was married and we were trying for children. Those problms were everything at the time.

This puts it in perspective though.