Morgan Tait

Morgan Tait is the NZ Herald's consumer affairs reporter.

Celebrating bravery, beauty of 'super tots'

Parents Rachel and Sam Callander with Evie, who had chromosomal and genetic disorders and died aged 2.
Parents Rachel and Sam Callander with Evie, who had chromosomal and genetic disorders and died aged 2.

Three years since their daughter Evie died aged 2, Sam and Rachel Callander aim to celebrate other babies with chromosomal and genetic disorders, or as they like to call them, super powers.

The Timaru couple launched the Super Power Baby Project, a photographic book of 50 Kiwi children from Northland to Invercargill with "super powers", on crowdfunding site pledgeme. Their bid to raise $70,000, which closes tomorrow, had passed its target last night.

The money will go towards helping children like Evie, who was born with Partial Trisomy 9q, Partial Monosomy 6p and super powers including "gorgeous giggle, the bravery and strength of the toughest hero, ability to draw people to her like a magnet and invoking care and love beyond imaginable depths".

Mrs Callander said the project was a chance to change perceptions of "super power kids" by altering the language used to describe their differences.

"As new parents we were thrown into a world of chaos, a world we didn't understand, a world with big scary words and the doctors told us that Evie wouldn't walk, wouldn't talk, she might not live very long, she'd have developmental delays and she wouldn't thrive," she said.

"Instead of focusing on all the things she couldn't do we used a language that celebrated who she was and all the things she could do."

Mr Callander said they came up with their own concept to describe Evie.

"Over time we started to talk about Evie's super powers as a way to describe her uniqueness. Using the language of super powers we found that with friends and family and doctors we were able to engage with them really well and people got it.

"It's about wrapping a language around it that's really positive."

The idea of the book garnered so much support on Facebook they quickly found their 50 super powered children, all aged under 5-years-old.

Jess Hurst, whose 2-year-old daughter Romy is in the project, said it has been "exciting" for the family to take part.

Such a book when Romy was born with Kabuki syndrome would have been a help, she said.

"It's something tangible that can be in hospitals and when someone is finding out that their child has super powers, when you're finding out all this information and you're frightened, to look at something so positive with all these beautiful photos of lovely children, it would be really helpful."

How you can help
*Donate or pre-order copies of the book at www.pledgeme.co.nz/1392
*Learn more about the project at www.superpowerbabies.com
*Offer messages of support at www.facebook.com/#!/SuperPowerBabyProject

- NZ Herald

© Copyright 2014, APN New Zealand Limited

Assembled by: (static) on red akl_a4 at 20 Sep 2014 16:15:07 Processing Time: 624ms