Ask Erica Perry if she sees herself as disabled and she will fall about in peels of laughter. “We’re all weird in our own way,” she declares with a smile. “Normal – what is normal?”
The bubbly 31-year-old from Taranaki not only lives life to the full – she pushes herself to the max. She’s the “supernanny” to a handful of kids and families in her hometown of New Plymouth, explaining, “Kids love me – that’s my magic.”
And in her spare time, when she’s not out with friends, she trains in kung fu and likes to ski. “I love to step outside people’s preconceived ideas of what is normal based on looks. I like to take these ideas and go one better – let me show you how far I can go!”
For the record, Erica has Miller syndrome, a rare genetic condition that affects her appearance from top to toe. Her limbs are shorter, and she has missing fingers and toes. The syndrome affects her hearing and sight, and she’s had more than 40 corrective surgeries, mostly on her eyes.
A non-stop talker, Erica says she’s driven by a love of people and a desire to socialise. “I do have a disability, but I don’t let it define me,” she tells. “I can either sit at home mulling things over or get out and chase my dreams, which is what I do. I never want to hide myself away and I don’t care what people think. I wear my onesie down the street when I feel like it.”
Not only does Erica like to push the boundaries – she loves to shock. “I have three toes on my right foot and only two on my left. I have four fingers on each hand. I was born with two spleens. Oh, and I have four nipples – that’s my weird thing.”
Miller syndrome affects less than one in a million births and there are fewer than 40 people worldwide with the condition. Erica’s younger brother Sherman also has it. As far as Erica knows, they’re the only two people living with the condition in New Zealand. “We are unique, one in a million,” she says. “If anyone else out there has Millers, get hold of me and I would love to meet you!”
Erica explains that the syndrome occurs when two parents are both carriers, like hers. She has an older sister, Janelle, who is not affected.
Erica credits her gung-ho attitude to her parents Carla and Maurice Perry. “I wasn’t mollycoddled, that’s for sure,” she says. “If my older sister could do it, I was expected to do the same – riding a bike, learning to swim, you name it.”
She says her mother taught her to try everything on her own and ask for help only if she really needed it. Today, she uses little adaptations to make tricky tasks easier – a bungy chord on the car boot makes it easier to close, a stick helps get washing out of the top-loader and a stool at the washing line helps her reach the clothes.
Erica’s used to people taking a second look at her, and yes, she did get bullied at school, but she learned to “suck it up”. “Embrace it – embrace what you have got! I stuck up for myself from the start. I would ignore it or give it back – but I would mostly kill them with kindness and just try to make friends,” she laughs.
Erica’s latest project is fund-raising for a second hearing device. Born moderate to severely deaf, she has worn hearing aids all her life, but a history of ear infections and surgeries means she can no longer wear traditional devices. At 18, she was fitted with one bone-conductor hearing device, which transmits sound through the bones.
She’s recently been turned down for government funding for a second device, but refuses to accept that means she can’t get one. One device comes with a $5000 pricetag. “Oh, well, I guess I’ll just have to raise the money myself,” she says.
Recently, she borrowed a friend’s second bone-conductor hearing aid for her other ear and says it “changed her life”.
“I’m sick of going, ‘What, what, what?’ I’m sick of missing parts of conversations and I can’t tell the directionality of sound – which makes it hard looking after kids. I need balanced, bilateral hearing.”
There’s a list of things Erica is keen to achieve in life and she says it irks her when so-called able-bodied people don’t make the most of what they’ve got. Last year, she did Outward Bound and this year, she learned to ski. In the future, she’d like to work with children who have disabilities. “I would love to be a mentor. I think I’d have a lot to give.”
And one day, when the time is right, she dreams of meeting someone special and perhaps having her own children. “Yes, it’s a dream for the future,” says Erica. “I’d love to have my own kids. But hey, I’m far too busy living my life and having fun to worry too much about finding a boyfriend.”
