Levi's Story

When Levi was 4 months old, he was diagnosed with Neurofibromatosis, a genetic condition that causes tumours to grow in your nervous system, including your brain, spinal cord and nerves. The only symptom was small coffee coloured marks all over his skin and for 5 years, there were no tumours.

But when Levi was 5, things started to go wrong. He lost his balance, struggled to swallow his food without choking and became seriously underweight. He became irritable which was very unusual for him, and his parents, Rachel and Scott, knew that something was seriously wrong with their little boy, who was usually so cheerful and content.

Initial tests couldn’t determine what was wrong with Levi, but his parents feared the worst.

‘We watched our happy boy completely change. He didn’t directly complain of pain but he was so miserable. He would hold his head to one side all the time which we later found out was because his head had so much pressure that it was literally too heavy for his body. It was awful’, said Rachel.

Then, finally an MRI confirmed everything Rachel and Scott been too terrified to really consider.

Their little boy had aggressive brain tumours on his brainstem and cerebellum. 

And doctors weren’t giving Rachel and Scott much hope…they told them chemotherapy would never shrink the tumour, and there was only a 20% chance it would even stop it from growing.

Levi had chemotherapy for 15 months, and amazingly the tumour shrank a little, against all the odds.

‘Scott and I knew it had shrunk before the doctors told us, he got his balance back and could eat again. His daily functioning improved a lot, we were really starting to feel hopeful’.

But 16 months later, Levi began having terrible headaches again and had to use a wheelchair because he couldn’t walk.

The brain tumours had grown again, so much that there was a blockage of fluid in Levi’s brain, causing massive pressure and he had to have major surgery to put in a shunt to drain the fluid.

And things just kept getting worse. 3 months later the shunt blocked which built up the pressure so much that Levi couldn’t stay conscious and he had to have another major surgery to unblock it.

‘Even though he was in excruciating pain, we couldn’t give him anything more than Panadol because it affected his level of consciousness. All I could do was give him an ice pack to put on his head’.

Levi then had another 12 months of very intensive chemotherapy. It was so strong that Levi’s parents had to wear gloves and a mask to dissolve the tablet that Levi then had to take!

7 years later, Levi and his family are still fighting.

In January 2016, Levi’s shunt blocked again and this time it very nearly took his life.

‘He's always been such a special soul, and I wasn't ready to give him back to God. I pleaded and begged with God to allow him to live and let me be his mum for longer.’

Miraculously, Levi survived the surgery with no serious brain damage, but he struggles daily with headaches, fatigue and pain.

Last June, doctors found more tumours on Levi’s optic nerve and spine.

There is no cure for Levi. Doctors are holding off with chemotherapy again because it is his very last chance and they want to give him as much time as possible.

But Levi is a very special boy. He is strong, funny and strong-willed. He continues to amaze doctors by doing things they have told him he will never do, like learn to ride a bike without training wheels.

Levi has participated in the Great Cycle Challenge every year since 2014 because he is determined to find a cure for other kids fighting cancer.

He is inspirational and always remains positive about his life and his condition. He knows how the tumour will continue to affect him, but as far as Levi is concerned, he has big plans. Last year, he achieved a milestone that was on his bucket list – he turned 13 and is officially a teenager. He now wants to complete the rest of his list, including owning his own golf club, being a hotel manager and becoming a Paralympian.