A neurofibromatosis diagnosis hasn’t stopped this woman from following her dreams

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.

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.

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.

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.

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.