Rare disease takes awful toll on boy

LUCY TOWNEND
Last updated 11:15 01/03/2013
jack stand
ROBERT KITCHIN/Fairfax NZ
"RATBAG": Whakarongo School’s Jack Peacock is one of only two people in New Zealand with Hunter syndrome.

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Jack Peacock is one of two people in New Zealand who suffers from Hunter syndrome - a life-threatening and debilitating genetic disease.

In his decade of living the 10-year-old has had open heart surgery twice, double hip surgery, battled ear infections, swollen optic nerves, problems with his respiratory tract, joint stiffness, limited mobility, extra fluid in his head and carpal tunnel surgery.

He has constant trips to the hospital, followed by months of rehabilitation work and frequent psychology visits.

Speaking on Rare Disease Day yesterday, his mother, Kirsty Taylor, said Jack was an intelligent kid who loved history, the universe, facts and figures, and computer games.

''He can't go outside and kick a ball, he's just physically not able to," she said.

''He knows he's not here for long.''

In October, when he was in Starship children's hospital after undergoing open heart surgery, he started talking about dying.

''He was tired, he'd had enough and he asked me what would happen if he died unexpectedly.

''I'd never really talked to him about the fact his disease was terminal, because for a very long time there I believed, wholeheartedly, that getting him treatment would give him the opportunity to live a longer life.

''That he'd get to do all those things that we get to do and he wouldn't miss out on having a girlfriend, driving a car or reaching birthday milestones.''

Jack started asking about picking his cemetery plot and where he was going to be laid to rest, Taylor said.

''He wanted to know it was ready, so we bought some land, went up there and he lay down in it and said to me, 'This is a good spot mum, lie down with me', so I did.

''He's started ''signing off'' and asking his mum to tell family members he loved them, and that his younger brother, Alex, could have his computer.

''It really did get to me and I went into a depressive state wondering how much longer he was going to be with us, but once he chose his plot it all went away.''

It wasn't death that he wanted, it was escaping the body he was trapped in, she said.

''When I told him there wouldn't be any more pain when he died, his whole face lit up.''

But now he talks about becoming an adult, an archaeologist and travelling the world, she said.

''Jack's been on medication for four years now and without it he wouldn't be here, but he's a lucky one to get the treatment he needs, because there's so many people with rare diseases that don't.''

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Rare Disease Day was important because it built a sense of community and camaraderie among sufferers and their families, she said.

Jack's family is holding a black-tie ''School Prom at The Grand'' fundraiser this Saturday in Palmerston North for Rare Disease Day.

- Manawatu Standard

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