Caring for my disabled son is a joy — but I fear what will happen when I die

Having a severely disabled child is a bit like being redirected on a flight when you're going on holiday. You were expecting sun, sea, beaches and cocktails with little umbrellas, but instead you find yourself in the middle of a northern European city. At first, it's a shock, but then you try the beer; it tastes really good. You see the stunning architecture - it's not what you had expected, but you know what, it is really beautiful and very special.

- ED DAVEY

When our son, John, was little, we were told he would almost certainly never walk or speak. I suspect that if it hadn't been for my wife, Emily, he never would have walked and he never would have talked.

John has an undiagnosed neurological condition. Throughout his life, he has received amazing care from the NHS – especially the brilliant team at Great Ormond Street Hospital. But if we'd followed all the advice we got when John was little – if Emily, who is a local councillor, had not dedicated so much of her time – I suspect he would be in a wheelchair now and probably not able to hold his own weight. He would be looked after but have much less independence and fun.

He wouldn't be able to go for rides on his tricycle — one of our great joys together. He wouldn't be able to wake me up each morning with shouts of, “Get up, Daddy!” He can only do those things because of another kind of care, the most important kind of care: family care.

Emily spent two years teaching John to crawl before the red letter day when he managed it by himself. Emily taught herself to massage his tongue and practise sounds until he found his voice, and gave me the magical moment when he first said the word “Daddy,” aged nine.

A nation of carers