Nothing slows Jack down

SCOTT HAMMOND

Enjoying life: ``It's cool to be a kid,'' says Jack, centre, who doesn't let haemophilia interfere with a busy social and sporting life. Jack hangs out with schoolfriends. Clockwise from Jason Love, with a hoop are Zac Davies, Joe Slape and Cally McDonald, along with dad Mark Uren.

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Seven-year-old Blenheim schoolboy Jack Uren was the first haemophiliac born in Nelson, Marlborough and the West Coast in 20 years.

It's a distinction that his parents, Mark and Tania Uren, wish their son didn't have.

But haemophilia isn't holding the Mayfield School pupil back from living an action-packed life, thanks to a positive attitude and no-fuss support from family, friends and the community.

Jack's haemophilia was diagnosed when he was 13 months old. Before that, Tania had noticed that he bruised easily, but put this down to inevitable toddler tumbles.

Changing Jack's nappy one Friday, she noticed he had a severe bruise on his bottom. A couple of days later, the haematoma had tracked down his leg and the Urens took him to Wairau Hospital, where his scrotum became swollen and bruised. Five days later, he was admitted to Christchurch Hospital and diagnosed as a severe haemophiliac.

"The bottom fell out of our world," Mark recalls. From knowing next to nothing about haemophilia, after nearly a week in Christchurch the couple were well informed, thanks to time with an outreach worker from the Haemophilia Foundation.

They learned that if Jack cut himself he would bleed at the same rate as anyone else, but for longer.

The main danger would be internal bleeding into the joints or muscles and the condition could be controlled by injections with missing clotting factor 8.

The Urens are grateful to Ronald McDonald House which provided an "amazing" home away from home at this difficult time, says Tania. There were no golden arches, just a clean and caring facility where staff went the extra mile to support the families staying there.

Back in Blenheim, staff at the creche he attended were worried about how they should care for Jack now they knew he had haemophilia. The answer was "don't change anything", said Mr Uren. As with any other child, if he fell over or someone ran into him, staff should check he was all right.

Nowadays, Jack's favourite game is "playing secret agents", he says. He loves playing soccer and T-ball and swims, which is good for his joints. One day, he wants to be a fireman, like his grandad, Ross Agnew.

"It's important that Jack stays active," explains Mark. "The fitter he is, the stronger his muscles and joints." This would help protect against joint injuries, which in a haemophiliac could cause blood to build up, potentially causing serious damage.

Treatment is twice-weekly injections of factor 8 clotting agent via a portacath, a small medical appliance installed below the nipple, providing direct entry to a vein that leads to the heart.

"Mum puts a needle in and takes blood out, puts the treatment stuff in then takes the needle out," Jack explains. "I am used to it. It stings though."

When Jack is about 10, he will learn to inject the clotting agent into a vein in his arm.

Most people generate factor 8 as required, Mark explains. Jack relies on injected factor 8, which loses 50 per cent of its effectiveness within a day.

A lifesaver for the family have been annual camps run by the Haemophilia Foundation.

"The first camp was a watershed," recalls Tania. "Watching teenagers with haemophilia walking around looking so normal made us feel, `We'll be OK'."

Other parents offered useful advice, such as getting the haemophilia outreach worker to visit Mayfield School before to talk to staff before Jack started .

Tania acknowledges that for schools, it is a huge responsibility looking after a haemophiliac from 9am to 3pm. "We didn't want them freaking out."

For Jack, the camps provide fun activities such as climbing walls, hydroslides and jetboating, plus the chance to "look and learn" from older children with the blood disorder. There are also sessions where he learns how to look after himself, by regularly cleaning his teeth, for example, to avoid gum disease, which can be severe in haemophiliacs.

Jack's haemophilia has to be taken day by day, says Tania. He could jump off a fence one day and be fine, then the next, might trip over his feet and have a huge bleed.

Mark is now southern regional delegate on the Haemophilia Foundation.

Kiwifirst is currently making phone calls asking for donations for children with haemophilia, he told The Marlborough Express.

Money donated would go towards helping children like Jack, especially with the cost of attending camps and workshops.

- The Marlborough Express

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