A Rare Disease Advocate Teaches Doctors to See and Speak Differently

When Rachel Callander’s daughter Evie was born was born with a rare, chromosomal disorder, she was told she wouldn’t walk, talk, or eat solid food. The doctor said her condition was “incompatible with life.” Callander’s own experience of her daughter was quite different. She said Evie made her stronger, taught her to celebrate life more intentionally, and to have a bigger and more open-hearted view of humanity. When Evie died at age two-and-a-half, Callendar, a photographer, traveled across New Zealand to photograph other children with genetic disorders in the Super Power Baby Project, an award-winning book of photography of children with genetic disorders. She has also built on her experience as a new mother to work with doctors and other healthcare professionals to help them become more effective communicators with patients and learn how to use language that empowers, rather than alienates, them. We spoke to Callander about life with Evie, the Super Power Baby Project, and what doctors need to know about talking to patients and their parents.