When Tiannon Cuthbert decided she’d had enough of her hair falling out and shaved her head, “everyone wanted to touch it”.
But on Challenge camps no-one blinked an eye.
The sense of belonging and being with people who understood what she was going through — as well as having a whole heap of fun — is what made Challenge special.
The Shepparton teenager was born with genetic disorder neurofibromatosis, which grows non-cancerous tumours in her body.
Now 17, she’s been involved with Challenge since she was four.
“It’s just connecting and sharing with people while still having fun — you can relate to each other,” Tiannon said.
Challenge is a not-for-profit organisation providing free support to children and families living with cancer — everything from activities and outings, camps and hospital support to scholarships and trusts.
Shepparton Golf Club is hosting a #DoingItForJarrod event on August 20, where players will be encouraged to wear yellow in memory of golfer Jarrod Lyle — who died four years ago this week — with all funds raised going to Challenge.
When Tiannon was four, what her parents initially thought was a lazy eye turned out to be a golf ball-sized tumour on her optic nerve.
After going to an optometrist and then hospital, they were told to return in three months for tests to be done.
“It grew from where I couldn’t notice it, to her eyeball hanging out of her face,” mum Alisa said.
“It was something like 12 months of chemotherapy to stop it growing and then once it was stable they de-bulked it. So, it’s still there; it’s just inactive.”
Her optic nerve was damaged in the process, leaving Tiannon blind in one eye.
Tiannon also has tumours in her brain, inoperable because of their location, and has been through about six rounds of chemotherapy to stop or reverse their growth.
The treatments saw her miss some important years of school.
Tiannon’s been involved with the Royal Children’s Hospital her whole life and has got to know the staff and made friends with other kids there.
“Even her MRI guy — he did her first MRI when she was four and he’s still there,” Alisa said.
But through it all Tiannon has had a wholly positive attitude, partly, she says because of all the fun she had along the way.
“When I was younger everyone asked how I was so positive about it and I was like, there’s people worse than me,” she said.
“I’ll always have [NF], I’ll never be in remission but I can be healthy.”
Alisa said there was always something for Tiannon and the family to look forward to through Challenge, particularly when they lived in Melbourne.
“To [Tiannon] going to the hospital, it didn’t matter because she was going to the snow in three weeks or we were going to see the Minions on the weekend,” Alisa said.
Challenge wasn’t only there for Tiannon, it offered opportunities and support to her parents and step siblings too.
Even if Tiannon wasn’t able to go on a camp or it was a for different age group, her siblings would be invited.
“If I was in hospital, they could go on the camp and have fun and not worry about me,” Tiannon said.
“It’s not like other foundations where you sit down and talk about your feelings, which personally I don’t like — I’m too positive about it all.”
Bookings are open now for #DoingItForJarrod Day at Shepparton Golf Club, with a full day of golf before an auction and drinks from 5pm until late.
For information visit www.facebook.com/sheppartongolfclub