Annette, I disagree, how they are being cared for has complete relevance to their story

yes, claire

Thank you Lavinia

@Anne After you live a week in a world that constantly heroifies killing you, sure. You've never been in my sketchers either.

@Anne
Why would we need to walk a mile in their shoes? People like Kassiane and myself are Autistic, we have a vested interest in making sure people don't think they can just abitrarily decide that Disabled = Not a life worth living.

Maybe some of you should walk in the shoes of someone whose "fitness to live" is being casually questioned.

Lydia Brown so your saying the parents should have not hooked them up to feeding tubes, giving them as much care as they could, and leave them suffer, because they should be left to fend for themselves, and be free?

I am FOR feeding tubes. I am FOR care. I am NOT for killing.

Again autism is not what we are talking about...Decline of health and suffering and no way back or treatment is what is being discussed here.

I think that we need to remember that these two children were born normal, it is their disease that has cause the degeneration of their livelihood. Not the parents, this family has had many years to watch the lives deteriorate, I do not think this decision has been taking lightly, but rather from a love ones own journey.

I look pretty sick on paper. Yet I want to live. GO fig.

anneke - someone did say that a feeding tube is considered treatment.

Thanks Annette.wow Kassiane you are able to speak and think for yourself...

Thank you Global for allowing us to discuss this.

Jennifer, that would be the worst thing that can happen.

Thank you Annette, for bringing light to this subject. I am terribly sorry for what you have had to endure for so many years and truly hope that what you believe is right, will be done.

As a professional working with people with severe disabilities since the 1960s, I see people with the same levels of disability, the same health challenges, and the same suffering having good lives or having empty lives. It is not the disability or even the pain that makes the difference. It is the kind of lives we provide for them. So we can spend our energy trying to validate killing these people or we can spend our energy trying to make their lives better. That is the choice we all face. For me as parent, that is why I resigned my Job as Director of a health ethics centre and spend my full energy caring for our son who neesds more care as his condition progresses.

KASSIANE,SAM & IZZY...as the mother of a 23 year old young man who is autistic, like you...he is bright,intelligent and very capable of speaking his mind and relaying his thoughts and wishes...and I know it is hard for you to see the 'grey' of this....but just imagine this....you are living everyday in excruciating pain,nothing relieves it...it is constant...day in and day out and you don't want to live that way anymore...b/c it's not living.it is just suffering ...now, you are not able to speak and express that to ANYONE....wouldn't you want someone who knows you and knows how you feel and think to be there to speak for you if you are ever in the position when you can't?

Anne, Autism is absolutely being discussed here. Children with so-called 'very low functioning autism' do not speak and cannot care for themselves in any way. By the very definitions being tossed around here about 'quality of life' - they would be on the chopping block. That's why this discussion is about ALL disabled people.