Diane Wilson's journey of courage

By Michele McPherson

Twelve years ago Diane Wilson couldn't walk the streets of Tauranga without being recognised but today she blends into the crowd. During a visit home, Diane tells Julia Proverbs why she enjoys the anonymity.
Diane Wilson has Tauranga's most famous face.
But she's not instantly recognisable.
That's because it's not the face she was born with.
Sitting at her dad's Otumoetai home dressed in faded blue jeans and a striped singlet, her hair scrunched up in a ponytail, she looks like any other 20-year-old.
But behind her broad smile is years of painful surgery.
Born with Crouzon's Syndrome, a genetic condition that meant the bones of her skull were fused together, Diane had her first operation when she was aged just 1. And her last three years ago.
The final 13-hour surgery is responsible for her perfect pearly whites.
"They aligned my jaw. Broke some of the bone in my jaw and straightened it up a bit and they took some of my teeth out. They were too big for my mouth. I had teeth coming from everywhere. I was on liquid food for a while," says Diane.
"I love my teeth now," she grins, flashing a silver piercing in her tongue.
When she was 8, Diane became the second person in New Zealand to undergo a new surgical technique, distraction osteogenesis, that involved attaching steel rods to her skull. The rods, which protruded from her head, were turned with a key, a millimetre at a time, over several months to move her mid-face forward. It allowed more bone to grow in the gaps created, eventually giving Diane her first real cheekbones.
It also allowed her to breathe through her nose for the first time, putting paid to the tracheotomy tube she had so often relied on and the feeding tube in her stomach.


"I remember having a long time off school and not being able to eat proper solid food, not being able to crunch and seeing my brother and sister eating tacos," she says, touching her temples, as she does a chewing motion.
"They had to turn the distractors a quarter twice a day. I remember it being painful but, when my doctor did it, it didn't hurt. It could have just been in my head," she adds, then laughs at the unintentional pun.
"I had a Dipsy hat like, you know, Dipsy from the Teletubbies."
When she had the momentous five-hour operation in April 1999, she became a household name in Tauranga and New Zealand.
Touched by her courage, the mayor at the time, Noel Pope, declared April 28 to be Diane Wilson Day and in August, following a second operation to remove the steel rods from her head, threw a party in her honour.
"I often think of her," says Noel, when he hears Diane is in town.
"We felt that she really was showing a tremendous amount of strength and grit for a youngster. I thought as a community we could get together and do something for her to lift her spirits and help the family out. We wanted to make it a cheerful day for her, not dwelling too much on her problems at the time. She'd been to hell and back over the years."
Classic Hits Breakfast producer Grayson Ottaway, who was then with Coastline FM, was MC for the celebration, which was held in the council chambers and attended by 100 invited guests.
"I was involved on two levels. Craig [Diane's' father] was a mate, and in an official capacity," says Grayson.
"We followed her story because it was fairly bloody big. She was an awesome kid, an incredible girl. She just didn't care. She was always tearing around. She was a hell of a kid."
A special guest was craniofacial expert Martin Rees, the plastic surgeon who performed the two operations at Middlemore Hospital and those previously.
"I remember her as being a plucky, attractive young lady who was obviously concerned about the fact her face was concave and causing a lot of difficulty for her socially.
"She was embarrassed about her appearance and wanted to get something done about it," says Martin, who is keen to hear about what she is doing with her life.
"She was a bright, intelligent, switched-on little girl. She dealt with it extremely well, although she complained that it was quite painful. It's been a pleasure to be able to help her and I wish her well for the future."
THIS week Diane has been doing "not much" with her life.
On holiday from Melbourne, where she now lives, she is enjoying much-needed time off from her busy job as a hotel housekeeper.
She has also brought her Australian boyfriend, Ethan Conroy, over to meet her father Craig, stepmother Kathryn and little brother and sister Riley, 4, and Myesha, 2.
"We went to the beach the other day and I introduced him to L&P and Kiwi fish and chips. I am going to take him up the Mount next week to show him the views," she says.
The couple met at a nightclub in Melbourne and it was not until a couple of months into their relationship that Diane told Ethan about her past.
"I didn't know anything was wrong. She appears normal and everything," says Ethan.
The only thing that gives it away is the wisdom she has gained.
"You can tell she's more mature because of it," he adds.
Fiercely independent, Diane left school at 17 and spent six months on the West Coast of the South Island before moving back to Tauranga, and then to Melbourne where her mother Susie, brother Michael and sister Bianca were living at the time.
Susie is still in Melbourne but Bianca has since moved to Brisbane and Michael to Sydney.
"I live on my own. I hate relying on people. I like to do my own thing," says Diane, sweeping her blonde hair out of her eyes.
Following a childhood dream of becoming an actor, she has recently completed a 12-week diploma in television and acting.
In a glamorous photo shoot taken for her portfolio, she looks every bit the Hollywood star.
"I put the photos on Facebook and people were, like, 'wow she's changed. She's looking great these days'." The cruel "alien" taunts she got in the school playground are now a distant memory.
"When I was at primary school I got teased a bit. They were just kids being kids really. As I got older, especially high school, people let go, they gave it a rest. I got to the point that I didn't care any more what people said," Diane recalls.
"I am the person I am because of it. I had to deal with some things people my age didn't. I could have hated the world and blamed everyone but what's that going to achieve? So I just dealt with it, knowing one day it would be over and here I am and it's over."
Now, with a head full of dreams and ambitions, she is looking towards the future.
Acting is one potential career path but she would also like to study criminology, revive her tap-dancing skills and travel the world. That is, when she's not practising her culinary skills or climbing a rock face.
"I like to cook ... anything really. And indoor rock climbing. I just love rock climbing."
At 13 she told the Bay of Plenty Times that she wanted to be a doctor but says that is no longer the case.
"I think I wanted to do it so I could give back but I can do that in other ways.
"I would love to talk to other kids with Crouzon's and show them life's great after surgery, that you can live a normal life."
Diane has been in touch with the Australia Craniofacial Unit in Adelaide and they are keen to meet her.
"I was basically one of the guinea pigs. It would have been great to have had someone to talk to," she says.
As she leans down on to her elbows she reveals a tattoo of three stars on her shoulder blade.
The larger of the three stars represents her twin sister, Jennifer, who didn't survive, and her younger brother Steven, who was born prematurely two years later and also died.
"It's so I have them here, with me," she says, her hand lingering over their epitaph.
She recalls how the tattooist was surprised when she said it "tickled".
"It was nothing compared to surgery.
"Life is great now the surgery's all over."
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- Bay of Plenty Times

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