INSPIRED by her five-year-old’s bravery – she “could even make Ironman bow” – mum, Carey Russell, is raising funds for her daughter, Jess, who’s been undergoing chemotherapy for a tumour on her optic nerve for about a year. 

Carey’s daughter, Jess, suffers from Neurofibromatosis (NF), a genetic disorder which effects one in every 2500 Australians, and causes tumours to grow on nerves throughout the body, including the brain and spine.

Carey was herself diagnosed with NF while giving birth to Jess, and not long after found out there was a 50 per cent chance the disorder would be passed on to her daughter.

“I felt a deep sense of guilt when Jess started forming birthmarks all over her, because I instantly knew that she had inherited this condition,” said Carey.

“Receiving a diagnosis as an adult gave me a false sense of what living with NF would be like. That’s the thing about NF, it affects every person differently. No two cases are the same.”

When Jess was four, she was diagnosed with an optic giloma: a type of tumour that grows on the optic nerve and causes vision to deteriorate.

Twelve months later, Carey was told that the tumour had doubled in size.

“I felt the floor move beneath my feet and my brain began to scramble,” said Carey.

“It’s a pain and deep grief that I would never wish on another parent.”

To save Jess’ vision she immediately had to start chemotherapy, a process made even more difficult because of covid restrictions.

“She’s only allowed one parent in hospital with her. Her brother Matthew is unable to see her, one of us always has to stay downstairs with him,” said Carey.

“Jess isn’t allowed to leave her room or her ward and all of the children’s services that are usually used to preoccupy and entertain kids in the oncology ward have been closed down.”

But despite everything Jess continues to stay strong, and to those around her she’s a hero.

“When I looked at my daughter, I saw her strength and unbelievably, her smile,” said Carey.

“She continued to laugh and shine in a way that made the term ‘NF Hero’ resonate deeply. She’s epitomised strength and courage and a cheekiness that would make Ironman bow out of respect.”

Jess’ bravery has inspired Carey to direct her own pain and anxiety into something meaningful – fundraising. She’s currently raised more than $6000 for people with NF through the Children’s Tumour Foundation (CTF), well surpassing her goal of $5000.

But Carey isn’t the only person fundraising for NF, and coming up is an initiative that raises awareness for those suffering with NF: “Cupid’s Undie run”. The initiative encourages people to register through the website before February 14 and do a run in their underwear to shine the spotlight on the disorder.

There will also be other challenges this year as part of the initiative, which will conclude on the February 28 with a “virtual Sunday session” featuring music, comedy and awards for fundraisers and participants.

For Jess and her family, chemotherapy is now the new normal for the next 12-18 months, but Jess’ strength continues to inspire them and the people around her to fight the NF battle with courage.

“I see past her lack of hair and recognise the beautiful, happy and positive girl she has always been,” said Carey.