Emma Sinclair, 34, from Forbes, NSW shares her story with Take 5’s Mitchell Jordan:
Rushing over to pose with Mickey Mouse, I smiled for the camera.
“I can’t wait to tell Grandpa about this!” I cried to my best friend, Rebecca, afterwards.
It was 2015, I was 27 and we’d come to the US so I could fulfil my dream of visiting Disney World in Florida.
My grandfather, Spike, and I shared a love of all things Disney and he’d wanted me to come here.
There was also another reason for my trip.
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At Disney World (Image: supplied)
At three years old, I was diagnosed with neurofibromatosis, a condition that causes tumours to form in the brain, spinal cord and nerves.
Although I struggled to play sport like my friends, I still had a great childhood with my younger siblings, Amy and Tom.
But by age 15, I needed surgery to remove all the tumours in my hand that were causing discomfort.
In the years that followed, I had many more surgeries to take out tender masses, though I got on with life as best I could and studied education at uni, following in my mum Toni’s footsteps.
Emma with her mum (right) Image: supplied
I loved children and thought that working with them would be the best job possible, but by then I’d made another decision.
“I’m not going to have children,” I told Mum.
The chances of passing on NF to them were too high and I didn’t want any child to go through that.
Instead, I became a foster carer and have cared for 40 kids.
This, along with getting a job in childcare, gave me such satisfaction and I wanted to make each moment count, which was why I’d gone travelling.
But in 2020, after feeling unwell, an aggressive, partially-malignant tumour was found in my brain and while doctors could remove some of it, they couldn’t take out the most aggressive part, which was at stage-three.
Emma in hospital (Image: supplied)
For the next year I underwent gruelling chemo and lost the use of my right hand from the surgery.
I had to learn to get around with the assistance of a wheelie walker as my coordination was affected, and teach myself to do basic tasks left-handed.
Working in childcare was no longer possible, but I remained determined.
“I might have NF, but it doesn’t have me,” I told everyone.
With Lottie (Image: supplied)
And even though my treatment for the tumour remains ongoing, I also have lots to look forward to.
I’ve bought a house, I do volunteer work at an op shop, and have welcomed a Cavoodle named Lottie into my life.
My plan is to train her to be my service dog if my condition worsens.
I hope by sharing my story it reminds others that your life is there to be lived – and that’s what I plan to keep doing.
