BRISBANE mum Jenny Woolsey had a childhood filled with teasing and taunting because she looked different.

Two of her children, Melissa, 17, and Nick, 14, share the same genetic condition, Crouzon syndrome, which can cause abnormalities in facial features, including a beaked nose, bulging eyes, and elongated wide skull.

JENNY SAYS:

My first memory of being different was when I was only three, walking down the main street. Someone stared right at me, so I turned and stared right back. At school I was called googly eyes, that was the main taunt of the day, or sometimes froggy eyes.

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I had good friends and they’d stick up for me … that’s what saved me. If I didn’t have friends, my life would’ve been hell.

NO-ONE STOPPED THE BULLIES

Back then, bullying was accepted in schools, nothing was done about it. My brothers, who didn’t have Crouzons, came home from school with bruises, they’d fight to protect me. I’d come home with skin off me, from being shoved over.

When I was really young, an X-ray showed my brain was being crushed by my skull, so I had a couple of operations. At nine, I had a major facial rebuild, my eyebrows are made from my hip bones, and my eye sockets were built up with my rib bones. I’m also blind in one eye.

I COULD FINALLY FEEL LIKE EVERYONE ELSE

I had another full-face operation at 18. It was horrific, I hallucinated and couldn’t open my eyes, my jaws were wired together, but I was sick of being stared at, sick of being called names.

I was still swollen after surgery and walked down the Queen Street Mall. No-one stared, or laughed, or called me names. I wanted to scream and sing and shout out, finally, finally, I knew what it was like to look and feel normal.

When I was born, my nanna was told I shouldn’t be out in the world because I was different, no-one should have to see me. My parents fought those prejudices at the time, just like I’m trying to empower my own children to deal with prejudice.

Like me, the kids have suffered taunts and the cruelty of others. Society has a preoccupation with looks, and that doesn’t help those who look different. Being out and about with my kids when they were little, was like reliving my childhood, people would stop and stare and point.

I’d reassure the kids, and I taught them what to say, that they have small bones in their faces and they were born that way. Melissa struggled with friendships — she found it harder than Nick.

MY KIDS HAVE HAD 24 OPERATIONS BETWEEN THEM

Melissa’s had 14 operations and Nick’s had 10. They also have hydrocephalus which effects the flow of fluid in the brain and spinal canal. They’ve both had lots of issues to deal with. Melissa’s brain grew down into her spine.

Nick needed a titanium halo device fitted, his eyes were starting to fall out of their eye sockets. They cut the bones from under the eye sockets, and they’re gradually brought forward over a few months. Melissa’s had the same thing done, she was on a CPAP machine for sleep apnoea and her airways were getting smaller.

It’s been a tough journey for all of us. I always felt I had to achieve more, to prove I was more than a face, a lot of people thought I was intellectually impaired because I didn’t look normal.

My husband Joe has been my rock, we’ve been together for 19 years — we met online. Joe said to me when we were discussing having children, “You’ve achieved great things, who is to say they won’t?”

OUR THIRD BABY HAD DOWN SYNDROME

We’d only ever planned on two, but I saw the big 40 coming and got clucky. I was pregnant within that first month! We were overjoyed. We didn’t know Jessica, who is now 11, had Down syndrome.

In the scans, she didn’t have any of the general characteristics, like a missing nasal bone and short femur, so they ruled it out. But, she did have wide-set eyes, so we went into her birth thinking she might have mild Crouzons or nothing at all.

After Jess’s birth, I got post-natal depression, I had prejudices I didn’t even know I had. I was judged for having Nick after having Melissa. People would say, “I hope you aren’t having another one like her?”

I’d say Crouzons is better than Down syndrome and use that as a comparison. And then I had a baby with Down syndrome! But I soon snapped out of it. There really are no guarantees what can happen, when you have a baby. I feel blessed to have my three kids and my husband.

They mean everything to me, Melissa is in Year 12, she’d like to be in film and TV behind the scenes. Nick is quiet, gentle, and is very creative — he likes art and drawing. Jessica wants to be in front of the camera, she’d love to act — we are a pretty creative bunch.

I’D LOVE A WORLD THAT WAS FULLY INCLUSIVE

I wish people wouldn’t judge others on how they look. My friends tell me I’m an inspiration, but I’m just living my life with my family, and loving it!

Jenny is a qualified teacher, chaplain, and youth worker, and has penned four books, the first is a book for young teens about Crouzon Syndrome: Ride High Pineapple.

jennywoolsey.com