Here, Jodie Hancocks, 48, tells the story in her own words.
A￼t the airport, my daughter Lucy was jittering with excitement.
‘Is it almost time to go?’ she pestered. ‘How long until we’re at Disneyland?’ Holding her hand, I tried to calm my own butterflies. Mine were of the terrified, rather than excited, variety, though.
Our family trip of a lifetime was also a medical expedition to save little Lucy’s face.
It was April 2013, and for the past four years we’d been praying for this moment. But now it was here, and with Lucy’s surgery just days away, I was nervous. At seven months old she was diagnosed with a very rare condition, Parry-Romberg syndrome (PRS).
Even at birth, I’d noticed her face was slightly asymmetrical, but it had taken all those months to find out that her problem was neither curable, nor even immediately treatable
in Australia. ‘The condition means the tissue and skin on her affected side will slowly waste away,’ our specialist explained. The muscle and bone wouldn’t grow properly as a result and Lucy’s face would drop on her left side, leaving her disfigured and misshapen. ‘It’s most likely just a cosmetic issue,’ he added.
PRS could also involve seizures, but luckily Lucy was unaffected. The plan was to wait until she stopped growing, around age 18, then fix the damage by reconstructing her face.
‘I can’t bear it,’ I sobbed to my husband Nic, 38, as we looked at photos of Parry-Romberg patients on the internet. What if she gets bullied? I worried. ‘They say it’s only cosmetic, but what about the psychological damage?’
Nic agreed and, reading more, I discovered a surgeon in the US who was an expert at operating on younger people with Parry-Romberg. ‘He transplants tissue into the face where it’s dying so the bone can continue to grow normally around it,’ I told Nic.
After a few emails and phone conversations, Dr Siebert agreed he could help Lucy, and with that ray of hope our journey to keep Lucy smiling began.
The surgery, a follow-up op, flights and all the costs would be around $150,000. With five kids, Nic and I didn’t have much spare cash, but we’d do whatever it took. We drained our savings, shared our story in the media, and fundraised.
As the years passed, the disease began to eat through much of Lucy’s facial tissue. But at last, when she was four, we were ready. We’d even booked a trip to Disneyland afterwards.
At the hospital, Lucy had just one concern. ‘I don’t want you to shave my head,’ she said. ‘Of course I won’t,’ Dr Siebert smiled.
During the nine-hour procedure, he used tissue from Lucy’s shoulder and back to transplant into her cheek. It didn’t take long for the swelling to settle. ‘You look great,’ her brother Tom, now 15, said.
At last, her face was normally shaped and we knew her bones could keep growing properly underneath.
Six months later, we were back for the follow-up surgery, where Dr Siebert neatened things up.
But about a year on, I noticed a dent in the back of Lucy’s head. Devastatingly, the condition had progressed. To halt it, she needed steroids and massive
doses of a chemo drug. ‘I’m getting bigger, Mummy,’ Lucy noticed.
In two months, she went from 18 kilos to 28 kilos. And worse –– it affected the transplant, which got really big and heavy, making her cheek drop and pulling the rest of her face with it. ‘I hate it,’ Lucy, then seven, would say.
Strangers stared and made comments. It gave us a taste of what she would have had to cope with had we not opted to save her face as early as we did.
‘It’s terrible how much weight that kid has put on,’ I heard one woman say. ‘What happened to her face?’ others demanded insensitively. I always managed to keep my cool, explaining Lucy’s condition to show her it really didn’t matter.
Luckily, it would only be short term. When the steroids were finished Dr Siebert would operate again.
In July 2017, we made another trip back to the States where the surgeons worked their magic. Incredibly this time, the hospital funded it so we only had to pay our expenses. And Lucy was so relieved as she looked in the mirror afterwards.
‘She’ll need another procedure next year,’ we were told.
We’re due to go back in September or October and hopefully that will be the last of it. It’s been tough, and cost around $200,000 in total, but we don’t regret the decision for a moment.
We’ve started a Facebook page, Lucy’s Champions For Hope, to raise awareness for other Parry-Romberg patients.
The cosmetic side of the condition can be a pretty devastating one. But the surgery means we’ve been able to see our girl smiling. And her happy face makes every cent we’ve spent totally worth it.
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