I know the exhausting struggle of looking after a disabled child – we MUST do more for our brave, neglected carers

MY son John is like many 12-year-old boys – obsessed with his iPad, loves trains and laughs at funny noises, especially if they sound rude!

Unlike most young boys, though, John can’t walk or talk properly, he is severely disabled. John has a brain condition that even the world-beating NHS doctors at Great Ormond Street Children’s Hospital can’t put a name to.

We don’t know what caused his condition. We don’t know what the future holds for him.

But like thousands of parents in a similar situation, my wife Emily and I just try to do everything we can to help John be happy and the best he can be.

One of John’s great pleasures is pushing a shopping trolley, but without help, he’d fall over. We were so proud when he learnt to ride a special tricycle - to us, that was the equivalent of an Olympic gold medal.

He loves it when I jog beside him. His favourite exercise is splashing in a toddler’s pool with a buoyancy aid. Seeing him sit upright on a horse at riding-for-the-disabled can make me feel pretty emotional.

On a good day John can put together a short sentence. But until a few years ago, we thought he would never say more than a few words.

He was nine when he said “Daddy” for the first time. I smiled for a week.

'Lockdown has been especially challenging'

Life with a disabled child is hard though.

My wife does a lot more than I do, and we are lucky to get some help. But it is relentless. And exhausting.

John needs 24/7 care. He has to be washed, dressed, fed and needs help to go anywhere.

He can shout and get cross. When he pinches you hard, he’s mostly telling you he loves you. But sometimes he’s getting his frustrations out. And it hurts.

Lockdown has been tough for millions of people – but for disabled children and their families, I can tell you, it’s been especially challenging.

My family are more fortunate than many, but I really worry about families with disabled children who are struggling financially. Whose housing is inadequate. Where the parents desperately need a break from caring. And maybe, where the disabled child needs a break too.

'I will fight for disabled children and their families'

The Sun is doing magnificent work with the Disabled Children’s Partnership, fighting for children and their families with the Give It Back campaign.

Ministers must listen to this call and must return the £434 million-a-year for respite care, support and equipment, that’s been taken from social care budgets for disabled children.