Here, Jenny, 50, tells the story in her own words.
My heart sank as my daughter, Melissa, 16, came home from school in tears, yet again. ‘They’re just really mean, Mum. They call me fish eyes,’ she cried. ‘They are not your friends, so it doesn’t matter what they say. You’re beautiful,’ I soothed.
Melissa and my son, Nick, 13, both have Crouzon syndrome. Born with the condition myself, I know exactly how it feels to be picked on for looking different. Crouzon is a rare genetic mutation that affects the growth of the skull bones. Having it meant that I was born with bulging eyes and a sunken face.
Growing up in the small town of Caboolture, Queensland in the 1970s, I really stuck out. People would stare and point as I passed them in the street. ‘Mummy, why do they do that?’ I’d ask. ‘It’s just because you look a little different,’ she would tell me.
When I was first born, Mum and Dad had to fight to let me have a normal life. Prejudiced people thought that I should stay locked away at home.But my parents were determined that I should experience the same childhood as my two brothers. I joined heaps of clubs including swimming, Girl Guides and the choir.
Although I had plenty of friends, some of the kids at school could be cruel and I would be taunted with names like ‘Froggy Eyes’ and ‘Elephant Man’. I was always made to feel unusual, but having friends meant I never felt alone. One time, a bully called me ‘Goggly Eyes’ as I walked past him. I ignored the jibe, but my best friend Diane leapt to my defence, shouting, ‘Don’t be so horrible!’ It felt good to have someone sticking up for me.
When I was 18, I underwent full facial reconstruction surgery. I’d initially had it done when I was nine, but as your face doesn’t stop growing until you’re an adult, I had to have another operation. This involved removing bones from my hips and ribs, which were placed in my face and jaw where the bones hadn’t grown properly.Having my face transformed meant my differences were a thing of the past.
Walking around Brisbane after the op was exhilarating. For the first time, no-one is looking at me, I thought. I can finally be normal like everyone else.It felt amazing.
When I was 32, I met my husband, Joe, now 55, online. He lived in the US at the time but we were serious about each other and by 2000 we were married and living together in Australia. I’d always wanted kids and broached the subject with him. Doctors had warned me that there was a 50 per cent chance I could pass on Crouzon to my children and I wanted Joe to understand the risks. ‘You’ve turned out great, so why wouldn’t they?’ said Joe.
We were fortunate to have three children. As well as Melissa and Nick, we have a lovely girl Jessica, 10, who wasn’t born with Crouzon, but does have Down syndrome.
Joe and I have worked as a team to give them the best childhood possible. If another child came up to them in the playground and asked why they had big eyes, we would act normally. ‘This is Melissa and that’s the way she was born,’ I’d explain. Kids are so accepting and would simply start playing with her.
Melissa and Nick both had a number of operations during their childhood to allow their brain and bones to grow.When Melissa was going for her very first op, I was so nervous. But I’ve since accepted that it’s something they need to go through to help with their condition. And when they turn 18, they will get to choose whether they want to have further surgery to adjust their face.
As the kids reached their teenage years, it became harder to protect them from cruel words. ‘I don’t care what people say, I am who I am,’ says Nick, who copes really well. But Melissa struggles with the bullying and gets upset. ‘Those who are mean are the ones who don’t matter,’ Joe and I will tell her.
Despite this, she still gets down about her appearance. It makes me sad to see my girl miserable, I want her to realise that she’s beautiful inside and out. But I know how hard it is to be a teenage girl who has a face that’s different.
It’s even worse nowadays because of social media as images of ‘perfection’ are projected 24 hours a day. Melissa has a boyfriend, also called Nick. They’ve been dating for over a year and he’s part of the family.‘I wanted a boyfriend so much at your age but boys never liked me,’ I’ll say. ‘Nick loves you the way you are and that is what’s important.’ It makes me so angry that kids get bullied for not looking ‘normal’.
People should be more accepting of someone who doesn’t look exactly the same as everybody else. My kids are wonderful people and looking different makes them even more special to me.
Read more in this week's issue of that's life!
