Strong Voices

In May 1989 Frances Clarke died of acute myeloid leukaemia; she was three and a half years old and had Down syndrome.

For the past 30 years Frances’ short life has been remembered by Wellington Down Syndrome Association’s Frances Clarke Memorial Awards recognising outstanding achievements.

Frances was diagnosed with leukaemia only nine months before her death. Those with Down syndrome are at a higher risk of developing the disease.

The extent of her disability was revealed as Frances grew.

“She was born in a big hurry – they had to give her oxygen – and I always thought that she had a touch of cerebral palsy as well because she showed no sign of walking. So she was well behind her targets and she never talked,” says her Mum, Pam Clarke.

“But she touched so many lives. I was involved at Play Centre at Point Howard. That community was very supportive. Even though she wasn’t advanced in a physical sense, she was a very happy girl.”

Frances was one of Pam and Forde’s three daughters. Her older sister Isabella was six years at the time of her death, and Kirsty was about to be born.

To honour Frances’ memory and to recognise the achievements of people with Down syndrome, their families and supporters, Pam and Forde set up the Frances Clarke Memorial Awards the year following Frances’ death, with money donated at her funeral.

Other parents might have then cut ties with their disability community. But Pam and Forde decided to support other children and families living with disabilities through the newly formed Wellington Down Syndrome Association and the Wellington Early Intervention Trust. And Pam became chief organiser of the Frances Clarke Awards, held for the first time in 1990 at Government House.

Every year the Wellington Down Syndrome Association presents trophies donated by the Clarkes – one for those under 16 years and one for 16-plus – and more recently a Community Category for outstanding contributions to the Down syndrome community.

It was Pam’s idea to ask Government House to host the awards, and it is an event that has now been supported by seven successive Governors-General. This year, Director-General of Health Dr Ashley Bloomfield was a special guest at the October event.

Forde says most people with Down syndrome would never have an opportunity to gather in a setting like Government House, and it reinforces the award recipients’ pride in their achievements.

This year, the 8–16 Year Category was won by Ava Saba, a passionate young dancer from Masterton. The 16 and Above Category was won by Michael Holdsworth, a medal-winning Special Olympics athlete and long-time employee of the IHC Library, who won the junior category at the first awards, and the Community Category was won by Gordon Cumming, the Manager of IHC’s Independence Collective, who helped develop a beer-brewing micro enterprise called Change Maker.

Above: Frances, nearly three, with her Dad, Forde Clarke, at Riversdale in 1988.