Super Power Babies
Evie Callander lived a short life in which she would never walk, talk, or even eat solid food.
But she had super powers.
"She was just a little bit magic," Evie's mum, Rachel Callander, said. "She had these deep, wise eyes and everyone just fell in love with her. They knew that she was special."
And she was. She was special for her warm giggle and her love of adventure, pushing herself around the floor of their home to explore. But Evie was also special for another reason. She was born with a rare chromosomal condition that set her apart.
In her 2½ years, Evie taught her parents, Rachel and Sam Callander, of Timaru, and many others who knew her, to love and communicate in ways they'd never known were possible. Now the Callanders have set out to complete the journey that Evie began, to show New Zealand - and maybe even the world - that their daughter and children like her are extraordinary.
For a few hours after she was born, Evie's super powers went undetected.
"We thought she was amazing, and beautiful, and nobody said anything," Rachel said. "She was so cool. She had this big mop of hair, and was so tweeny-weeny little."
Then, later that day, Evie threw up.
"She choked, and turned blue, and was rushed up to the NICU," Rachel said. "The next morning the doctors came in and said, ‘We think Evie's got some complications.' "
First, doctors diagnosed Evie with a chromosomal condition called Edwards syndrome, a devastating blow for the family. Only 5-10 per cent of children with Edwards syndrome survive past their first birthday.
Later, the doctors said it wasn't Edwards syndrome after all. It was a condition so rare, it had no name.
"They said, she's got too much of one chromosome and not enough of another," Rachel said. "They thought she might be only one of about seven cases in the world."
That day, the Callanders entered a world of "no", of "she cannot" and "she will never".
Evie, they were told, suffered from skeletal anomalies. She would struggle with breathing and respiratory issues. She would have trouble eating and choke frequently. She would almost certainly not live to adulthood.
They filled out pages of developmental assessments that demanded, "Can your child do this? Can your child do that?" and answered "no" to every question.
"I thought, well, that's stupid," Rachel said. "What are they going to learn about Evie from this? That she's a blob and she can't do anything?"
Defiant, they created their own evaluation, "Evie's Awesomeness - The Official Assessment Form". It read, in part:
Q: Can your child roll competently?
A: YES! Evie is a pro roller baby! She even commando rolls in stealth mode for extra sneakiness. She will roll to get places really quickly.
Q: Can your child hold a spoon and feed herself yoghurt?
A: YES! Evie can feed herself approx ½ teaspoon at a time when she is in the right mood.
Q: Can your child play sleeping tiger and other great games?
A: YES! Evie loves games and interacts by laughing, kicking, flapping and moving close to us.
To the medical world, Evie's condition was "partial trisomy 9q and partial monosomy 6p". To Rachel, the term was empty, useless. It didn't tell anyone anything about their daughter, a toddler with a mop of dark hair, long, beautiful fingers and a bright smile. A child who loved games.
Within a few months of her birth, they began referring to Evie's condition as her "super powers". It was a way to acknowledge that Evie was born different, and would experience life differently than many children. But it was empowering. It focused on the qualities that made her amazing.
A SUPER POWER DREAM
Three years after Evie's death, Sam and Rachel are on a quest. And what they hope to accomplish seems a Herculean task.
They want to create a new language for people to think and speak about children with conditions like Evie's, a language of super powers. They hope it gives people the words to ask questions and learn about the children's lives in a way that's open, not negative or uncomfortable, Sam said.
"People are interested, in a really positive way, but they don't have the words to articulate, to try and describe [the child's] distinctiveness, and neither does the parent," he said. "We still don't know how to actually engage."
They also hope it gives Super Power Babies and their families a way to show the world that they aren't bound by words like "defect" or "disabled", or by benchmarks of "normal" development they might never meet. Instead, they can celebrate the ways their child's condition makes them unique.
To make their dream a reality, Rachel, an award-winning professional photographer, has turned her lens to photographing children who were born with chromosomal and genetic conditions.
"We're helping people to see how these children are amazing and beautiful, by showing them little bits at a time," Rachel said. "Pointing them to their eyes or their smile, and encouraging them to engage and ask questions - what can this child do, and who are they?"
The couple formally announced the Super Power Baby Project in June, reaching out to families of other Super Power Babies nationwide via Facebook and their website. Families interested to participate in a photo shoot were invited to fill out a questionnaire that asked, "What are [your child's] super powers?"
So far, more than 75 families have responded from all around New Zealand, including the Far North and Invercargill.
"Carter has many awesome super powers!" one mum, Suzi Helliwell, wrote. "But I think his most amazing super power is the way he has changed his family for the better. Carter has made his siblings kinder people and his parents more appreciative of all the little things in life."
"Tymon is so brave," another mum, Angela Gold, wrote. "He is often pricked and prodded for blood and not one tear is shed, instead he just smiles his way through it. His biggest superpower, however, was his ability to make our family complete and his power to teach us to love unconditionally."
"Some people have said, we're so happy that we get to talk about this because we never share it," Rachel said. "They say, we think these things about our own child, but in our own home. We never talk about it elsewhere."
On Sept 7, Sam and Rachel launched a Super Power Baby Project PledgeMe campaign. They're hoping to raise $70,000, an amount that would fund everything from travel and the use of photography studio space and equipment in multiple locations nationwide to the design and printing of 1000 copies of a hardcover art photography book that will feature Rachel's photos of about 50 of New Zealand's Super Power Babies. The photo shoots are free for the participating families.
The couple acknowledged that it's a huge amount of money, but with three weeks left to go in the campaign, they've already raised more than $26,000.
They hope the book can become a resource for families shocked to find themselves with a baby who has super powers - families who might feel overwhelmed in a world of "no".
"The doctor is still going to say all the sad stuff," Sam said. "But they might also say, here's this book about other Super Power Babies. There's real joy in the experience. It's going to be a really hard journey, but it's going to be really precious."
The Timaru Herald