Charity battles Pharmac

Cameron O'Reilly, 5, qualified for growth hormone treatment. Photo / Glenn Jeffrey

A small charity is locked in a David and Goliath-style battle for funding, and is hoping to gather more ammunition from an international conference next year.

The Prader-Willi Syndrome Association wants Government drug funding agency Pharmac to help more sufferers of the rare eating disorder.

Only 22 New Zealand children under 12 have been diagnosed with the genetic condition, but the effects on their lives can be severe.

It leaves them permanently hungry, and sees them go to great lengths to find food - even foraging in bins.

Sufferers are born limp, and struggle to develop before an insatiable hunger makes many obese. Growth hormone treatment helps develop muscles that allow them to work off excess weight.

Previously, Pharmac only funded the expensive treatment for children under a certain height, and only eight of the 22 diagnosed meet the criteria.

Pharmac removed the height criteria in February, but now funds treatments based on how quickly a child grows.

Spokesman Simon England said the criteria was to ensure those people who need growth hormone treatment get it.

"If the person is growing at a particular rate, their body is producing sufficient growth hormone."

Parents of children who don't qualify have to go without, or find up to $10,000 a year for the treatment.

In contrast, all sufferers in America, Australia and Britain get free treatment.

National director Linda Thornton hopes knowledge gained at the International Prader-Willi Organisation's seventh annual conference in Taiwan next May will help the quest.

And she's delighted her group can use its Cathay Pacific/Herald on Sunday High Flyers award to reach the event.

She found out about Prader-Willi when her 25-year-old daughter Francie was diagnosed at 3 years old.

Thornton struggled to get information about the condition, and set up the association with two other parents in 1989.

It's grown substantially, and member Karen O'Reilly is hopeful the conference will help it stay on top of American and European research.

O'Reilly's son Cameron was diagnosed when aged 4 months. He qualifies for the Pharmac-funded treatment and, now aged 5, has started school and is doing well, she says.

"We're only a small group but each of our kids is just as important as any other kids."

* They're our unsung heroes - community groups battling to make life better for everyday Kiwis. Too often they face a fight for funding and lack of public recognition, so the Herald on Sunday has again teamed with Cathay Pacific to give six of the most deserving free international flights. Our annual High Flyers Community Awards will give them the chance to learn from good work in other countries, carry out research and attend conferences. This year's recipients are: The Tenants Protection Association Christchurch, Associated New Zealand Myalgic Encephalopathy Society, The Hearing House, Refugee Services Aotearoa New Zealand, Prader-Willi Syndrome Association and Youthline Auckland. We continue our series profiling the winners by focusing on the Prader-Willi Syndrome Association.