Flipper of Hope

Our beautiful 8 year old daughter Katherine suffers from Neurofibromatosis (NF), which is a condition that causes tumours to develop anywhere on the nervous system, including the brain, spinal cord and all nerve endings. Katie currently has tumours in her brain and on her spinal cord. She has endured years of chemotherapy treatment since she was diagnosed at 18 months of age, recently finishing a 3 year stint on a new trial drug, Trametinib, in February. Tumours can form at any time, and there is currently no cure.

We are fundraising to hopefully one day find that elusive cure. The money raised will be donated to a charity called the Flicker of Hope Foundation, which was established in 2018 by a mother whose daughter also has NF, as there was nothing out there set up solely for research into this hideous condition. ALL money raised for Flicker of Hope goes directly into research projects. Check out their amazing contributions so far at www.flickerofhope.org.au

Although Katie’s condition came on as a spontaneous gene mutation at birth, she now has a 50% chance of passing it on to her children, and their children, and so on and so on. NF is more common than cystic fibrosis, yet no one has heard of it. We are hoping to spread awareness of Neurofibromatosis and raise a lot of money to find better treatment options and hopefully one day, find that cure for our babe, and all of those living with NF.

Katie’s father Vid will be swimming in the Port to Pub on the 18th March next year, in Western Australia. It is a gruelling 25km ocean swim from Fremantle to Rottnest Island. His motivation of pushing himself so far is simple: “Katie faces challenges every day of her life, I will challenge myself by doing this for her”.

The money raised will get him over to WA, cover his entry fee into the swim and for his accompanying paddler and skipper on the safety boat. The remainder will be going to Flicker of Hope, who helps us cling to that hope of a brighter future for our Katie x