Sandra Dick: Cut red tape for families out of time

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As a parent nothing could be worse than discovering your precious child is desperately ill.

Bad enough watching them wrestle with chicken pox. Tough enough when it’s 4am and they’re screaming, puking, pooing and you’re wondering how to call work in the morning to say you’re not coming in. Again.

But to discover they are dying? How does someone cope with that?

Worst for me was when my youngest son was around 18 months old. A febrile convulsion seemed to last forever. Into an ambulance which seemed to drive agonisingly slowly, him on a trolley, waxy and white with eyes half shut that I was certain were lifeless. Terrifying.

Within days, he was fine – like that Calpol advert where one minute they’re wiped out, next they’re destroying the house – for him, the dreadful episode passed but the horror of witnessing it will be there forever.

That, though, is nothing like the burden Nicky Rendle carries every day. Her handsome son Leon is facing the fight of his life against a rare form of cancer, yet is taking it on bravely and without fuss.

There have been nightmare hospital visits, gut-churning discussions with doctors and medicine that has made him sick, frail and a shadow of the fit and healthy teenager he once was.

What might help – certainly his doctor thinks so – is time out. A holiday, warm sun on his face and the chance to be a 15-year-old boy and not a worn down, pricked and pummelled hospital patient.

Down the years I’ve met many families in similar situations. Dealt the worst hand possible, they keep chins up and cling to the few good bits among all the horrible stuff.

But they often share a common bond: they have to fight every single step of the way to get what sometimes are really very small things to the rest of us, but to them are all that matters.

Whether it’s someone to agree to cover the insurance for that longed for holiday in the Florida sun – as Jane Park has today pledged – or adjustments to their home to make it easier for a wheelchair, to wash or to get a sick child in and out of bed, there often seem to be obstacles at every corner.

The great bureaucratic machine of council, health authority, rules and regulations become like wading through mud mixed with super glue while wearing concrete boots, so often it’s friends, family and strangers who dig deep and come to their aid.

What the Rendle family – and so many others – deal with every waking moment is so challenging and cruel that the last thing they should have to cope with is more anguish.

There is, after all, really no time to lose.

twitter: @sandradick