Simple daily tasks like getting dressed and tying shoelaces are hard for children like Hannah and Liam Wilson.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
The siblings, aged 11 and 10, from Wodonga, have battled with neurofibromatosis (NF) - a lifelong degenerative disease - since birth.
Their mum, Vanessa Engel, said her children's condition is genetic.
"It gets worse; it doesn't ever get better," she said.
Despite dealing with tumours and scoliosis - an abnormally curved spine - the pair is keen to help others in the same boat, even if it means getting a bit chilly by running around in their underpants.
Cupid's Undie Run is a series of annual fun runs - sans pants - around Australia to raise money and awareness for the Children's Tumour Foundation. Both Hannah and Liam have participated before, and plan to again.
"They've been begging to do it," Ms Engel, who hopes the Run helps people better understand the condition, said.
"[There's a] daily struggle of people staring and making comments about their back.
"They've got bumps all over their body and people stare and wonder why they have so many spots; having to worry about them being bullied."
IN OTHER NEWS:
NF affects roughly 1 in 2,500 Australians. On average, a child is born every three days with NF, making it more common than cerebral palsy. It's unpredictable, progressive, and has no cure.
Tumours can form on the nerves, including on the brain and spine. The condition can lead to cancer, blindness, deafness, physical differences and chronic pain.
"This is the most common rare genetic condition and yet no one knows of it," Ms Engel said.
Children's Tumour Foundation chief executive Leanne Dib said there had been big steps taken to raise the profile of the disorder, but there was more to do.
"Events like Cupid's Undie Run and ongoing lobbying with the Australian government has helped fund millions of dollars in research to help those living with NF," she said.
The federal government in 2021 announced $7 million in NF research funding.
The 2022 Cupid's Undie Run is on until February 28 as smaller, do-it-yourself community events.
Our journalists work hard to provide local, up-to-date news to the community. This is how you can continue to access our trusted content:
- Bookmark https://www.bordermail.com.au/
- Make sure you are signed up for our breaking and regular headlines newsletters
- Follow us on Twitter: @bordermail
- Follow us on Instagram @bordermail
- Follow us on Google News