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Page last updated at 13:22 GMT, Wednesday, 25 February 2009

'One day I'll watch my son die'

Claire and Noah Bates

Few can truly understand what the Camerons are going through after the death of a child. But for parents like Claire Bates, whose son has cerebral palsy and epilepsy, it is an experience they are dreading.

One day, I will watch my son die.

My husband - my rock - says it's just something else we will deal with together, as we have everything else that Noah's difficult life has bestowed on him and us.

But I don't want to deal with it. I really don't. Every single day I think about life without him.

But until this morning, I'd not actually thought about what it would be like when it happened. Whatever the differences in our circumstances, David and Samantha's lives felt like my life and they struck a very personal chord with me.

Ivan had cerebral palsy and every day they faced the challenges I do.

We dreamed he'd walk out on the Lords outfield as England cricket captain

When I heard today's news about his death, I pulled over my car, took deep breaths and watched my hands begin to shake.

My middle son asked me why we weren't going to pre-school. I told him a special boy like Noah had died and a family just like us was very sad.

Our son Noah Elliot Bates was born at 1908 GMT on Boxing Day 2002. That makes him six - the same age as Ivan.

Mine had been a perfect pregnancy. I adored my bump, I'd had no sickness and textbook scans. Paul and I knew we were having a boy and named him Noah.

Daddy chatted to his unborn boy every night. We dreamed he'd walk out on the Lords outfield as England cricket captain, after, that is, he'd been to Oxford where he'd got a First in English.

Fed by pump

He'd marry a lovely girl and live in a lovely house, with lovely children and a lovely dog. Lovely.

My waters broke Christmas Day night - the day Noah was due - and 25 hours later he made his way into the world. Silently.

I asked the midwife over and over why he wasn't crying. I remember pleading to know what was happening. I hadn't even seen his tiny, damp face. He'd gone straight out of the door.

Noah Bates
Like Ivan, Noah is a six-year-old with cerebral palsy and epilepsy

Two hours later we were reunited, of sorts. He lay in an incubator in the special care unit hooked to wires, tubes and bleeping machines.

Noah had, for some as yet unexplained reason, simply not taken his first breath. The starvation of oxygen had caused severe damage to his brain.

Brain damaged. Mentally handicapped. Spastic. Call it whatever PC or un-PC name you will. It all means the same: I am the mother of child with cerebral palsy who will need me to feed him and change his nappy for the rest of his and my life.

He also has epilepsy - just like Ivan - and fits several times a minute.

Last August, we were told he was extremely unlikely to live beyond 18.

Quadraplegia doesn't just extend to limbs, but sometimes to organs too. Noah can't swallow correctly because of it. Every second or third swallow goes directly onto his lungs, so he is fed overnight by a pump pushing nutritionally complete sachets of feed via a "button" surgically inserted into his tummy.

The thoughts and prayers of the whole country are with David, Samantha and their family
Gordon Brown

Because he swallows onto his lungs, he is very susceptible to pneumonia (he has had it three times) so this drastically reduces his life expectancy. Brain damage itself is not necessarily a reason to shorten lifespan. It's more likely pneumonia or Noah's epilepsy that will kill him.

People ask me what that felt like, how we reacted to being told. I want to scream at them.

It felt - and feels - exactly the same way it would feel if someone told you your healthy child would die prematurely. People seem to think that because Noah's quality of life is minimal that somehow, that kind of news has less impact, it wouldn't hurt as much.

It hurts very much. However Noah is, he's my son and guess what, I love him. Totally unconditionally. His disability means nothing to our family.

Claire and Noah Bates
Last year, Claire was told Noah was unlikely to see his 20s

I became obsessive about photographing him, touching him and smelling him. I bought a beautiful wooden box with a Noah's ark painted on it, as a "memory box" to put inside shoes, socks, pictures, Mother's Day cards, handprints, even a syringe - one of the 12 a day we use for his medication.

I began to resent him going to school - taking precious time away from me - and cancelled visits to all but the closest of friends, paranoid that any time not entirely devoted to Noah was a waste.

Slowly, "normal" - I hate that word! - life resumed after "the Noah news" and I realised that our lives had to involve the humdrum, they had to tick along like other people's, not only for our sake but for Noah to whom routine means everything.

But on days like today, I do think about what it will be like in that hospital room, watching my gorgeous son slip away from me and I wonder why some people have to go through such pain.

My good friend - an Army padre - could never give me an answer for it, and I haven't found one.

Noah's legacy will not be the way he giggled, the way he kicked a football or the way he hugged me

People find it hard to imagine that a child like Noah can "give something back" to their parents. He can't smile, he can't speak and he probably doesn't even know who his mummy is but he gives back in so many incredible ways.

Noah's legacy will not be the way he giggled, the way he kicked a football or the way he hugged me. It will be the way he taught me about unselfish love, about the tolerance my other two beautiful boys already have, about truly what is important in life and what's irrelevant and about the strength he has given to Paul and I that has made our family a loving, indestructible unit.

He has also given us great joy and laughter - in ways I couldn't begin to describe.

I won't insult the Camerons by pretending to know how it feels for them today but I admire them for their stoical determination to make Ivan's life a good one and thank them for giving me - and the hundreds of other families in similar positions - a silent strength.

Below is a selection of your comments.

This story is so relevant to many families living with CP and other conditions. My sister was born with CP and we were told she would not survive and all the challenges that we would face as a family. My sister just turned 31 this year!!!!!. IF anything comes from this tragic story let it be community awareness of the challenges not just as a family but the apathy we have as a society.
Linda Shorthouse, Australia

I am sitting in a classroom full of kids as I read this, and my eyes are welling up. What a lovely, heartfelt article. Noah is simply gorgeous and there is a greater power out there that governs us and our lives. You were chosen to receive the biggest and most beautiful blessing in the form of Noah. Enjoy him, and thank you for enriching our lives by your writing. Indirectly it's Noah passing on something precious to all of us. God bless you.
Meena Nambiar, Bromley, Kent

I don't think there is an answer as to "why". I think when things happen there's no reason; it's just happenstance. I like your idea of the memory box a lot. Many people will be giving their children an extra hug tonight after reading your story.

Gail, St. Louis, USA

I too have a son like Ivan and Noah. He is now 12, will never walk, can't talk or communicate, takes 20 or more doses of strong medicine every day and is still in nappies. Despite all that, nothing makes me happier than seeing his face with a hint of a smile. I dread the day when we may have to face the same situation as the Camerons. He is our boy, and we love him whatever.

Such a lovely story about an extremely beautiful child. Their legacy is to remind us to value every moment with our children whoever they may be
Emily Brittin, New Zealand

I'm reading this article and crying - in an office full of people. I can't imagine what David Cameron and his family are going through - and I hate myself for saying it - but I hope I never have to. Claire, I wish you and your son and the rest of your family the very best, and hope that your "one day" is a very long way off. Thank you for sharing your story.
Lisa Dormon, Sandhurst

What a beautifully written and poignant piece. It's feels like a love letter to this treasured son - no melodrama or emotional manipulation, just love and honesty.
LB, Richmond, North Yorkshire

I work with families with children with additional needs, and with the children themselves. Not a day goes by when i do not feel immense respect and admiration for them all. I am sorry that the society we still live in is predominantly so unflinchingly unbending - they have to fight every day for what should be their automatic rights. The death of a child is devastating - but let us remember that their lives are inspirational. And we should be recognising this as a country, in their lives, not only in their passing.
Lucy Skye, Reading

Thank you for sharing Noah with us, and for the powerful and eloquent picture you paint of your family.
James Rouse, Southampton

It is tragic that any child should have to go through what your Noah and Ivan have and it is not until we hear news like today's that the rest of us realise just what we have already and take for granted. I hope you have many more happy moments with Noah he is a beautiful boy and you and your family sound so together and solid, my family and i wish you happiness and will remember you in our prayers.
Mrs Heather Maguire, Bromsgrove, Worcestershire

In this story there is love, pure and beautiful. I'm sure Noah knows who is mum is and loves you very much. Yes, life may be short, but it's what you put in that counts
Theresa Parish, Kings Heath Birningham

Dreadfully uplifting!
Chris Ashton, Dunfermline UK

This is one of the most beautiful and touching articles I've read this year.
Ryan, Chicago, U.S.

What a lovely story. I hope that you enjoy family life with Noah for years to come. God bless you
Jo, north Yorkshire

Claire, Your son is beautiful with the most amazing eyes! Thank you for telling us your story on a very poignant day. I wish you many, many, many happy days with your Noah. Every good wish and much courage.
Sam Sayer, Bristol, UK

I know only too well the heartache that David & Samantha will be feeling. I lost my son, Andrew when he was just seven. He also had severe Cerebral Palsy. I feel so sad for them, because when this happens the pain is almost too much to bear. I also have another son, who is now 15 and has the same condition, and I know that one day we will loose him too. Life is cruel sometimes.
Liz Nickson, Cheshire

Thank you for such a beautiful reminder of how wonderful all children are, but also how fragile life can be.
Andy Hickey, Buntingford, Herts

As a father of three boys, my heart goes out to Claire and her son Noah, and to the Cameron's during this terribly sad and difficult time. Even if a parent knows their child is not likely to live a long or 'normal' life, I don't think anything can ever prepare you for the pain of losing a child. Claire and her family, along with the Camerons, are in my prayers.
Simon Bickersteth, Walsall

It is stories like this and the Camerons' that make me want to go home right now, hug my kids, and be thankful for what I have.
Adam, Birmingham

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