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Moving story of courageous Jonny

Mar 27 2004

By Avril Deane, The Journal

 

Did you watch it? Could you bear it? Did you manage to tear yourself away from the Newcastle United match and turn to Channel 4 for The Boy Whose Skin Fell Off?

If so, you must agree with me.

I don't think I have ever watched a more affecting, moving, heartbreaking yet inspirational television programme in my life. The story of Jonny Kennedy, who was born in Whitley Bay and died on the train taking him home to Alnwick - the place he said where he felt "so right" - was told largely by Jonny himself.

This marvellous, funny and humble little man, just 5ft 3in tall and with a young boy's voice had spent just one day in his 36 years without bandages because of a horrible genetic skin disease. We saw him going to choose his own coffin - and having it stored in his garden shed - kissing model Nell McAndrew at a charity event, visiting his father's grave and having lunch with his long-time friend Lord Rupert Redesdale at the Houses of Parliament.

We also met his wonderful mum, Edna, who explained the pain his illness had caused her over the years knowing she could never cuddle him or hug him because his skin would blister and tear. Watching her change Jonny's bandages in a weekly ritual which must have been dreaded by them both was one of the most heartrending things I have ever witnessed, not to mention the trauma of seeing him try to put his cap on with hands that were no more than scarred and scabby stumps.

Yet Jonny rarely admitted defeat and his astonishing faith in a pain-free heaven and the cast-iron belief that he'd been born as he was in order to learn some important lessons in his time on earth made one feel completely humble.

Nell McAndrew was humbled too. Next month she runs her first London Marathon in aid of DEBRA, the charity for which Jonny worked so tirelessly right to the end. Thankfully she was able to tell him of her plan and he was clearly thrilled.

Anyway, my phone rang halfway through the programme. A friend. Hankie in hand and tears streaming, I asked her if she was watching Jonny's struggle. "Oh no," she said. "I couldn't watch something like that."

And there's the pity of it. In a world where horrible people do unspeakable things to each other and cruelty knows no bounds, when money, business and celebrity count for more than integrity, kindness and decency, thousands of people will have thought it too harrowing to see, too near the knuckle to sit through, too sad for words. It was all those things and I'm crying still - but I wouldn't have missed it for anything.

**********

Children face smoking peril

My recent item about the double standard folly of allowing violent arcade games at the airport where guns, violence and terrorism are taboo topics and too scary to contemplate prompts the raising of another thorny issue - smoking when children are present.

For me, as a non-smoker, travelling in the smoking carriage of a GNER train all the way to London would be my idea of hell.

But how would you feel as a smoker to find two young children sitting in there with their mother who was lighting up at regular intervals. Guilty or not guilty?

The question is posed by a Journal reader who writes: "I smoke - and that's my business while it's in my space and doesn't interfere with someone else's. If it does, then I stop - even in my own house. And unconditionally when children are near.

"When I made regular train journeys from Newcastle to London I always booked a seat in the smoking carriage. However, imagine my horror when during one trip, and not for the first time, I noticed a mother exposing her two young children to the perils of the smoke-laden atmosphere.

"The selfishness of parents who do this is unquestionable. But surely no child under legal smoking age should be allowed to travel in the smoking compartment. Should they?"

Of course they shouldn't, but then they shouldn't allow smoking outside hospitals either. And they do.

**********

Will Mel Gibson's controversial and ultra-violent film, The Passion Of The Christ, draw the crowds in the North-East as it did in America? Or will Starsky and Hutch do better business?

Either way, I find the timing interesting as we're only a few days away from Easter - exactly the point at which Gibson chooses to start his account. And yet if you were to do a survey right now, nine out of 10 people still think Easter is to do with chocolate eggs, bunny rabbits and a trip to B&Q.

**********

Have you been debating which words and phrases get on your nerves following the survey by the Plain English campaign, which put "at the end of the day" at the top of the most irritating list?

"Absolutely" gets a high percentage of the votes in our neck of the woods, as does "let's touch base". I get cross when people say, "I'll give you a bell" (let's face it, too heavy) or "there you go" when you're not going anywhere. Still, I'm told I'm guilty too. Apparently I say "how fantastic" a lot. Well, at least it's upbeat and better than "Cheer up … it might never happen!"

**********

I'm a real fan of those little packs of dried fruit marketed to go into children's lunch boxes. So I was really curious the other day to buy Dried Plums in a mini-bag at Safeway. Dried plums? You've guessed it. Prunes. Seems that children of today - like those of yesterday - turn up their noses at the very mention of the word prunes. But talking with plums in the mouth … that's a whole different story.

**********

Sex was lovely in the end

Three cheers for the finale of Sex and the City which ended on a warm note of optimism and happily ever after. And however contrived you think that makes it, there is no doubting the feelgood factor that comes from watching storylines knit together beautifully.

In fact, a friend of mine who has recently recovered from cancer admitted she was dreading watching it in case Samantha died from her breast cancer at the end of the series. Instead there she was large as life, back at work, in high spirits and happily in love - the first really positive thing my friend says she's seen in years. Uplifting.

**********

Typical. First official day of spring last weekend. The daffodils look wonderful. The clocks go forward tonight to signal the light nights really are here. And the long range weather forecasters are already predicting a wet summer. Who asked them to spoil the party?

So youthful Des O'Connor is to be a dad at 72 and everyone seems to think that's great. Yet when women become mothers beyond 45, they're dubbed selfish, crazy and irresponsible. It's true what they say. A woman's place is in the wrong.

**********

It's not something any of us would have even stopped to think about, but when North-East surgeon Duncan Irons cut his finger along with his suppertime avocado - as reported in The Journal the other day - the fall-out was huge.

There were cancelled operations and missed appointments.

Yet accidents do happen, especially in the home, and being angry and disappointed about something that would mean a simple plaster and a strong curse for the rest of us helps no-one. Indeed, the whole story emphasises the point that surgeons, the medical elite on whom so much depends, are human after all.

**********

Charlton may have lost the match at St James's Park on Saturday, but there was a Charlton winner in the ground all right. Jack Charlton was in the 1892 Club with his friends and proved to be the hero of the day.

Though he was with a big crowd of friends, Big Jack patiently signed countless autographs and shirts and good-humouredly had his picture taken with several fans. Nothing was a bother.

Bless him.

 

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