Sixty years from Keith to Sophie

5 February 2009

Sixty years from Keith to Sophie

Sixty years ago, a Wellington couple set their hearts on creating a better life for their son Keith, who was born with Down syndrome.

Margaret and Harold Anyon’s vision led to the founding of IHC, which this year celebrates its 60th birthday.

The Anyons were told their youngest son would never go to school and were advised to put him in an institution. They refused and instead started a campaign for Keith’s right to be educated. In 1949, joining forces with other parents who were dissatisfied with the way their children were treated by health and education professionals, they formed the Intellectually Handicapped Children's Parents' Association, the forerunner to IHC.

Their achievements are visible everyday – in the fact that people with intellectual disabilities no longer live in institutions away from their families and out of sight of the community. Levin’s Kimberley Hospital, the last major institution housing people with intellectual disabilities, closed in October 2006.

People with intellectual disabilities now have the same employments rights as every other worker in New Zealand, with the repeal of the Disabled Persons Employment Promotion Act in December 2007.

But the work goes on. IHC is still campaigning on behalf of children with disabilities who are denied access to their local schools, with a complaint now before the Human Rights Commission. The organisation is also pushing for better health care and for real employment opportunities.

Above all, IHC’s goal is to provide opportunities for people with intellectual disabilities to live their lives like anyone else. Its volunteering programme is passionate about encouraging friendships and including people in the life of the community.

Sixty years on, another child with Down syndrome, Sophie Tuenter, 9, helps to show how far we’ve come. She is the face of the 2009 IHC Annual Appeal. Sophie goes to her local school with her friends and adores singing and dancing – and, of course, being dressed as a fairy. She is a little girl just like any other.

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Sophie – a fairy tale

The cameras were ready to roll and young actor Sophie was getting the final touches from make-up and wardrobe.

But the make-up artist couldn’t improve much on Sophie Tuenter’s star quality. She simply applied some lip gloss, put her hair in two pig-tails – and pronounced her ready for the silver screen.

When it came to wardrobe, Sophie put on her beautiful fairy dress and wings and then dived into the bag of costume accessories for her wand and tiara, and danced on the grass for the sheer joy of being a fairy.

Sophie, 9, is the face of the 2009 IHC Annual Appeal. In her favourite fairy disguise – she will appear in a new series of IHC television advertisements that went to air on 1 February and her photograph will feature on appeal envelopes.

The joy on Sophie’s face doesn’t reflect what has been a tough start in life for the young West Aucklander from Massey. She was born with Down syndrome and by the time she was five months old, she had undergone heart surgery to repair two holes in her heart and a heart valve.

Then at four years old, while she was helping her Dad, Derek, to feed the birds in the garden, she fell awkwardly and badly broke her thigh bone. That meant for the next two months Sophie was in a body cast and unable to move.

Things could only get better – and they have. Sophie lives with her parents, Teresa and Derek, and two teenage sisters, Katherine 19 and Lexi 16. Teresa is at home supporting Sophie, and Derek works for the Air Force as an avionics communications technician. Katherine is studying art at Whitecliffe College of Art in Auckland.

“It has helped her progress, having older siblings,” Teresa says. “Having a bond with her, they know what she needs.”

Sophie has been going to a mainstream school since she was six. Riverhead is a small country school about ten minutes from where the family live. Her two best mates are twin brothers Luke and Aiden. “They have got a real bond with her and play with her and look out for her. I am very proud of her progress,” Teresa says.

Sophie first came to IHC’s attention when she auditioned last year to do a radio advertisement for the organisation. “Sophie loves speaking and performing – and she likes an audience.”

One thing led to another and Sophie, her mum and sister Lexi found themselves on location for the filming of a television advertisement. “She did enjoy it. She was very well behaved, considering she had to listen and follow instructions. And it was a lot of waiting around. She was exhausted by the end of it,” Teresa says.

But the final word comes from Sophie:

“I laughed. I danced like a fairy,” she says. “The fairy dress was big and wonderful. It was cute and I had pigtails. My hair was sticking out. I had a pink dress with wings and pretty bows. Yes, wings – pink and purple wings.”

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