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 travel in a car for longer than an hour.
For most of her childhood, Lily was so scared and anxious about someone bumping her tumour that she missed out on many of the things kids her age were doing, like birthday parties, playing sport or even heading out to the shops.
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 easily. 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. She was given the opportunity to join an internationally-led clinical trial that would give her access to the MEK Inhibitor, Trametinib.
It was almost inconceivable how quickly Lily's life changed. Her pain decreased dramatically, she was able to attend school more regularly and start to form friendships with her peers. She was able to live her life without fear and anxiety of someone accidentally bumping her tumour.
Lily's participation in the international research trial has helped pave the way for the Australian clinical trial we are now raising funds to support. She is a living testament to its potential to have profound impact on a person's life.
It is comforting to know her involvement has meant other kids and young people will be given a second chance at a happy, more carefree life. A normal life." - Joanne Dwyer, Lily's Mum