Book to highlight specialness

Parents and children to be featured in an upcoming book (back, from left) Debbie McEwan with daughter Jaime (5), Suzy Helliwell with son Carter (2), Claire Peters and Cory Smythe with son Lucian (4); (front, from left) Rowena Bell and son Riley (7), Andrea and Colin Russell with son Matthew (3). Photo by Gerard O'Brien.
Parents and children to be featured in an upcoming book (back, from left) Debbie McEwan with daughter Jaime (5), Suzy Helliwell with son Carter (2), Claire Peters and Cory Smythe with son Lucian (4); (front, from left) Rowena Bell and son Riley (7), Andrea and Colin Russell with son Matthew (3). Photo by Gerard O'Brien.

A planned coffee-table book featuring children with rare disorders will accentuate the positive aspects of their lives, Dunedin parents of participating children say.

Timaru photographer Rachel Callander, who is compiling the book with husband Sam, is in Dunedin this week to photograph the children in various sites, including Otago Museum's Tropical Rainforest, Moana Pool and in their own homes.

The children have chromosomal/genetic conditions, and 75 are taking part nationally. Each will feature in a double-page spread in the book, which is intended to be the legacy of Mrs Callander's daughter Evie, who had an extremely rare condition and died three years ago, aged 2. Mrs Callander, who studied in Dunedin, said she had an instant connection with each family she met while travelling the country. In Dunedin, six children were taking part.

Entitled Super Power Baby Project, the book's name was inspired by Mrs Callander's observation of Evie's uncanny tendency to pick up on subtle environmental cues. Mrs Callander (31) did not want to focus solely on the medical aspects of her daughter's condition, and decided to think of it as a kind of ''super power''.

Dunedin parents gathered yesterday to discuss the project, saying it was an opportunity for their children to be celebrated. Parent Suzy Helliwell said she hoped the ''beautiful'' project could help change how society viewed special needs children. It meant ''Joe Average can see how amazing our children are.''

Mrs Helliwell said her son, Carter, had a chromosome abnormality so rare he might be the only child in the world with it.

Parents Colin and Andrea Russell, whose son Matthew has spina bifida and hydrocephalus, hoped to highlight similarities between all human beings, regardless of disabilities.

Parents Claire Peters and Cory Smythe, whose son Lucian has Cardiofaciocutaneous syndrome, said the book would show people that life went on, and could be enjoyed, even with a rare disorder.

The oldest Dunedin child to feature is Grace Hughes (9), who recently featured in the Otago Daily Times because her parents Pip and Gareth Hughes had received a diagnosis for her of Coffin-Siris disorder.

The book will be released later this year.

- eileen.goodwin@odt.co.nz

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