Being Me: Erica

Born with a rare condition that affects her outward appearance, Erica Perry proves it’s what’s on the inside that counts. She lives by herself, runs half marathons, and talks to kids about self-belief.

Erica is a living testament to the saying, “It’s what’s inside that counts.”

Born with Miller’s Syndrome, (postaxial acrofacial dysostosis) a recessive genetic condition that affects her appearance, Erica thrives through life, determined to hold her own independence.

“Everyone’s got a different body, mine is just extra different."

“Everyone’s got a different body, mine is just extra different' she says, simply explaining how her eyes, mouth and limbs are effected.

Erica and her brother are the only people in Australasia with the syndrome. There are approximately 40 people known to live with it throughout the world.

The 34-year-old from New Plymouth left home six years ago when she decided that to really be independent, she needed to find her own place. A move that saw her confidence soar.

“I have had my full licence for nearly 10 years, I love the freedom of it.”

Erica goes shopping

Erica is a big believer in setting goals and in order to be as fit as she can be, set her ultimate goal to run a half-marathon. 

“I worked super hard and then I did it in four hours. It’s an amazing achievement for someone who has feet the size of a four-year-old’s and missing toes.”

Now a regular at the gym, her PT Josh adapts the equipment for her use. She also joins in with group circuit training.

“I just feel like I'm one with the girls in the group circuit. Not segregated into the disability group.”

Erica lifting weights.

Erica has taken on social running as her favourite sport and does a ‘Park Run’ every Saturday. She has even managed to get her parents involved.

“I do it every Saturday without fail. What I really like about Park Run is you can run, walk, jog, you can wear a tutu or a onesie, it's just really fun.”

For Erica, running is her time to focus and switch off from the world.

“When I run I don't have to be doing anything, I just want to run and be free. My own physical body is doing the physical steps and that’s a big thing.”

Erica doing a talk at a school hall.

Throughout her school years, Erica says she was teased and often bullied. Now she gives back to schools by going in to help and leading motivational conferences.

“If I can help one kid feel good about themselves that makes me feel good too.”

Erica is now asked to come into schools and talk regularly. She has even been told she should write a book about her life.

“But it’s a bit hard to write a book when I’m living my book. I just like life and that’s my drive to keep going.”.