Dialog Box

Children's Tumour Foundation of Australia

Lily-Rose's Story

Lily is a bright, bubbly 13-year-old girl, but her life hasn’t always been this way.

She was diagnosed with NF1 when she was 9 months, but for the first two years, it seemed to have little impact on her life until an MRI revealed an orange-sized lump at the base of her spine.

It was a plexiform neurofibroma that caused severe, stabbing pain and had a negative impact on her quality of life. The pain caused by pressure on her tumour from laying or sitting in one position for too long meant she was unable to sleep through the night or sit in a car for longer than an hour.

A trip from the Central Coast to Westmead Children’s Hospital that would normally only take an hour or so, would need to be broken into three parts to allow time for rest breaks and top ups of pain medication to help her cope with the journey.

Lily was so scared and anxious about someone bumping her tumour that she couldn’t go anywhere with crowds; even a trip to the shops would need to be planned around quiet periods.

This meant that Lily missed out on a lot of the fun things other kids her age were doing, like birthday parties, fairs and the zoo. 

She was terrified of school and her mum; Jo was constantly having meetings with teachers to help reduce the chance of Lily being accidentally knocked on the back.

School became such an issue that Lily was constantly coming home early because of the pain or because she had made herself sick from anxiety. They ended up moving her to a more understanding and supportive school, which was an improvement but not without its challenges.

To help ease her pain, Lily was placed on a daily schedule of medication, but the combination of pain and pain relief meant she tired very easily and was difficult to rouse in the mornings. This made it hard for her to attend school regularly, be on time for class or form friendships with other kids.

Her little body was so dependent on the medication, that if she missed a dose, she would be in severe pain for most of the night.

In 2015, her neurologist gave the family their first glimmer of hope in 8 years. Due to the severity of Lily’s symptoms and lack of any other effective treatment, they were put a list to be a candidate for a new drug.

She underwent some testing and a baseline MRI to ensure she was a suitable candidate, but by mid-way through the year she was approved on compassionate grounds to be part of an internationally led clinical trial that would give her access to the MEK Inhibitor, Trametinib.

It was almost inconceivable how quickly Lily’s life was changed in the most marvellous of ways. Her pain decreased dramatically and over a period of months, was able to wean off all of her other pain medications. She was finally able to attend school regularly, form amazing friendships with her peers and live her life without the fear and anxiety of someone accidentally bumping her tumour.

It also meant she was able to fully enjoy and participate in the family camps run by the Children’s Tumour Foundation each year. It was at these events that Lily was able to meet other kids with NF and her parents could connect with families who were going through similar experiences. Both Lily and her mum have made lifelong friends through the CTF camps.

Throughout her life, Lily’s strength and kindness has always shone through even during the darkest of times. Lily’s brave participation in the international MEK trial has helped pave the way for the Australian-based clinical trial to progress.

It is comforting to know that her involvement has meant other kids and young people will be given a second chance at a happy, more carefree life. A normal life."

Jo Dwyer, Lily's Mum