She’s absolutely perfect, I cooed, infatuated. Back home, I popped my girl down in her cot and hummed her to sleep. Without a murmur, Zahnee fell off straight away. In the morning, I noticed a small red spot on her forehead and over the next few days it grew and grew. Soon, it had spilled onto her neck and down her back.
‘It’s just a port wine stain,’ all the doctors said, assuring me there was nothing to be concerned about.
But I had a feeling it was something more. As the weeks went by, the red mass spread further down her back and across the right side of her face.
‘It has a mind of its own,’ I told my mum, Wendy, 58.
Desperate, I turned to the internet.
‘Mummy will figure this out, don’t worry,’ I soothed to my tiny bub.
Finding similar symptoms online, I took my findings straight to the doctor.
‘I think Zahnee has a hemangioma tumour,’ I said.
It’s a non-cancerous tumour, made up of blood vessels. Tests confirmed I’d been right, and as the doctor explained what it meant, I held my breath.
Development delay, loss of hearing and eyesight...
Bouncing Zahnee on one knee I stared blankly as the list went on.
‘...no real hope for the future,’ he added, explaining it could take over her brain.
Looking down at my happy girl I couldn’t believe this was happening. She was given oral steroids to slow down the growth and over the next two years we saw 13 different specialists. But nothing seemed to work and my poor girl deteriorated. She wouldn’t reach for toys or giggle.
She’s like a zombie, I thought.
‘The tumour is growing outwards towards her eye,’ the specialist said.
He explained we could try surgery, but the only option was overseas.
For two years I researched the best surgeon who could remove the tumour from underneath her eye, while saving her sight.
After I had a little boy, Zandon, it was hard seeing him tick off his milestones while Zahnee, then four, still struggled.
But something amazing happened. Around Zandon, Zahnee was happy. He seemed to be the missing piece of the puzzle in her life and they were instant best friends. Devastatingly, around the same time, Zahnee was losing her sight.
‘She has no depth perception now,’ a doctor explained.
As it worsened, she was left unable to walk. Sending off her medical records, doctors around the world all said the same thing – they couldn’t operate.
Then finally, when Zahnee was five, I found a doctor in New York who was positive he could help. Slicing open her face, the surgeons would and rebuild her eye muscles giving her sight back. It was going to cost $100,000, so we had bake stalls and fundraisers. A year later Mum, the kids and I packed our bags.
‘Are you ready?’ I smiled at Zahnee, trying to hide how frightened I was.
I watched nervously as Zahnee was wheeled into theatre.
When she finally came out five hours later, the doctor said, ‘It went perfectly.’
A week later, Zahnee ran down the hospital steps unassisted for the first time in a very long time. And when the bandages came off, she was a completely different girl. While the tumour was still on the inside, on the outside, the strawberry mark that had stretched over her face was gone. In its place were some surgery scars.
Now able to hold her balance, Zahnee happily skipped down the street. We spent six weeks in America while she recovered and had check-ups.
She was even well enough to enjoy every ride at Disneyland with Zandon. And when we got home she learnt how to ride a bike.
‘Woohoo!’ she squealed, zooming around the park.
Zahnee still needs regular check-ups to ensure the tumour isn’t placing pressure on her brain.
My girl has been left with a facial deformity too. Taking it all in her stride, she puts on a brave front when faced with questions about her unique looks.
‘My princess crown slipped off and accidentally poked me in the eye,’ she giggles when people ask.
She still has developmental delays, but my girl doesn’t let anything hold her back. Now 12, Zahnee has competed in a triathlon and even written a book!
‘She’s my little fighter,’ I tell anyone who’ll listen.
In future, she would like to get plastic surgery to hide the scarring from her operation. Together with Zandon, 11, she’s even started a dog-minding business and some of their earnings will go towards Zahnee’s corrective surgery.
Hitting every bump in the road with a smile, my girl is so very brave.
Zahnee is making her way in this world and she is doing it her own unique way.
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