From the Christchurch Press, 7 Jan 2015
Evie Callander is an unlikely superhero.
She lived just two years, but inspired a book, a change in how disabled children are viewed and a remarkable fundraising campaign to empower other kids like her.
Evie was born in 2008 with a rare chromosomal disorder.
Sam and Rachel Callander were told their daughter would have developmental delays, would never walk or talk and "would not thrive". But they decided to celebrate what Evie could do rather than what she couldn't.
They invented a "new language" that described their daughter's "super powers", including an ability to draw people to her like a magnet.
They didn't use words like disability, abnormality or retardation.
Evie died in 2010 but her legacy lives on through the Super Power Baby Project. A fundraising campaign for the project on PledgeMe in September 2013 raised more than $85,000 in 35 days.
The money allowed Rachel, an award-winning wedding and portrait photographer, to hit the road and photograph more children with genetic abnormalities in their home towns.
More than 70 Kiwi kids, all with their own "super powers", have now been enshrined in the Super Power Baby Project book.
Since its launch in August, Rachel has shared the ideas behind it with thousands of people.
She spoke to 2500 people at TedX Auckland, an "amazing opportunity to share so passionately about what I believe in", and 150 paediatricians - "the ones in the front lines" - at a conference in Napier.
"Often the first thing paediatricians will say is, 'We're sorry' or, 'We should have seen this coming', and it just puts that negativity straight away into the parents' minds," Rachel said.
"They are [now] rethinking how they phrase those first encounters to make the journey as positive as possible."
Rachel said health boards were buying copies for their clinics and schools were getting copies for their libraries.
She and Sam still missed Evie every day, but it was "a different kind" of sadness. "What she has taught us and allowed us to share is beyond incredible. We're so proud of her."
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