When new-mum Rachel Callander’s beautiful baby girl passed away from a rare disorder at only two years old, the bright and bubbly photographer’s world was shattered. But five years on from the devastating loss, Rachel and her loving husband Sam are determined to make sure their daughter’s short life wasn’t in vain.
The couple say Evie, who was diagnosed with a rare chromosomal disorder just hours after her birth, changed their whole perspective on the idea of disability. “As soon as you have a child who is sick, you learn to not sweat the small stuff – you treasure every single day,” reveals Rachel, 33. “But more than that, I learnt from Evie that how we view and treat people with disability is completely flawed.
“We got so tired of using negative, deficit language when describing Evie. Every person has strengths and weaknesses, but everyone has value and potential, and I wanted to share that idea.”
Superhero tots
So in 2013, the Super Power Baby Project was born. It was an idea that first came to Rachel when Evie was still alive, but it wasn’t until three years after her death that the bereaved mum found the courage to make her dreams a reality.
With help from Sam, Rachel poured her heart and soul into a gorgeous portrait book featuring children with chromosomal and genetic disorders, Just like Evie.
“The kids in the book have super-powers such as unconditional love, perseverance, kindness, joy, being ambassadors of peace and having a ripple of influence that change people for the better,” says Rachel, who devoted a whole year to capturing the infectious grins and gorgeous personalities of more than 70 tiny tots.
“It was such a healing experience for us. To feel that community spirit, and to know I was with people who totally understood me and I understood them, was really cool. “The parents I met spoke
about how their child has brought about positive transformational change in their family and community. We can learn from each other if we can set aside our judgments, prejudices and fears about difference.”
Embraced by parents and medical professionals alike, the book, which was published last year, has been overwhelmingly well received, says Rachel. “We’ve had so many messages from people saying that the book has changed their approach to parenting or the way other people see their children. And it’s been amazing to hear from paediatricians too, who are also changing the way they approach disability.”
Rachel’s life-affirming work continues to be recognised. Not only did her efforts earn her a prestigious accolade at the Independent Publishers Book Awards in May, but the author has also given a TEDx seminar on her journey and is this week up for the Making a Difference prize at the annual Attitude Awards, which celebrate achievement in the world of disability.
“It just feels incredible to have our work recognised as significant,” explains Rachel. “Evie changed our whole perspective on disability and opened up so many opportunities that we never could have dreamed of. “We’re so proud of her and the things that we learnt from her. The implications of those lessons just keep going. She was this amazing little human with so much capacity and so much potential. For us, it’s really special to be able to harness that potential and share it with other people.
“Evie completely destroyed the cultural perception that disability is a deficit within a person,” says Rachel, with hubby Sam, right.
Grief over losing her beloved girl led Rachel to create a magical book featuring other amazing kids.
Action boy Luke doesn’t let his Down syndrome get in the way of his inquisitive nature.
Cutie Kaahu has Prader-Willi syndrome and a beautiful spirit
Little cupcake Ayda, who has Down Syndrome,loves dancing.
Undiagnosed smiler Silvio is a technology expert
Kabuki Syndrome sufferer Romy is always curious.
Caped crusader Charlie, who has Syndrome Without a Name, or SWAN, can snuggle and cuddle all day long.
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