By Sahar Foladi
Children’s Tumour Foundation has launched its first Step towards the Cure challenge – a call to action for those who’re suffering from neurofibromatosis (NF).
The rare genetic disorder causes benign tumours on the nerves and grows on parts of the body including the skin.
There’s 10,000 Australians with NF who face are stuck with the lifelong disease with no cure or limited treatment options.
Step towards the Cure is a virtual challenge for everyone no matter where they are to sign up and walk, stride, ride or roll a distance of choice.
All donations will contribute to NF research.
CTF is seeking to raise in excess of $100,000 to support local research.
Dandenong resident Cassie Pike has had the Type 1 condition since she was 18 months old after a health nurse checked and questioned her café-au-lait spots.
“When I was a kid, it was like roll it (NF) out in different versions of the word,” Ms Pike said.
That’s when the surgery phase began for Ms Pike to remove the nerve tumours from her body with the first surgery at the age of seven on her knee.
Her most recent surgery was in 2019 when she had a large lump removed from her neck.
“I really struggled. My main chemo was on my right leg and went over my knee. I never owned shorts till I was 16 years old because I didn’t want people to stare at it, you can notice it straight away.”
The surgery she had at the age of 16 led her down the path of self-confidence.
“I got to the point where I said I don’t care. If I think I look nice then if people are going to stare they can stare that’s okay. They’re confused about what they’re seeing.”
Now at the age of 28 with a fiancé, a corporate job and a positive group of friends, Ms Pike wants to help increase the awareness around NF with organisations like Children’s Tumour Foundation (CTF).
CTF hopes to help those who’re mostly affected by the disorder.
Details: stepstowardsacure.com.au
