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Bare bumps and all for charity

Melissa MeehanAAP
Thomas Forbes and his mum Leanne both suffer from the genetic disorder Neurofibromatosis.
Camera IconThomas Forbes and his mum Leanne both suffer from the genetic disorder Neurofibromatosis. Credit: AAP

For as long as he can remember Thomas' life has been a rotating door of specialist appointments to manage multiple tumours growing on his spine and skull.

The Melbourne based 26-year-old was diagnosed with Neurofibromatosis at just 14-months-old.

He's undergone numerous surgeries to remove the tumours, including one the size of a grapefruit on his chest and others on his back that affect his balance and continually need monitoring.

It's a genetic disorder that causes tumours to form on nerves in the body, including the brain and spine.

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His mum Leanne, 57, suffers from the condition too. Although her diagnosis was later in life, she struggles with it day to day.

She has a tumour the size of an orange under her arm - which can't be removed because it could mean losing control of her arm.

Between them, weeks and months are busy with medical and healthcare appointments.

Thomas has ongoing chiropractic sessions as well as remedial massages every week.

And while they try not to let their illness define them, it's exhausting both physically and mentally.

During the warmer months their skin, covered in bumps, gets itchy and uncomfortable. Their growths often get looks from strangers.

Without ongoing physiotherapy Thomas can end up in hospital - his body becoming painful and out of shape if he misses an appointment.

"I'm really scared that these tumours can turn nasty for me, it's a real concern - but it's important to share our story and let people know the hurdles we face," Thomas said.

Neurofibromatosis affects one in every 2500 people and is as good a reason as any to strip down to your undies and raise money for important research into neurofibromatosis.

The Children's Tumour Foundation will hold its 10th Cupids Undie Run in 2022, and while COVID-19 won't ruin the party things will look a little different.

"Although it's a shame we can't all be together in the original capacity we were expecting, we're asking everyone to get involved and show their support for the many Australians facing the adversities of Neurofibromatosis," says Leanne Dib, Chief Executive Officer, Children's Tumour Foundation.

Registration is now free, so assemble your mates, form a team as individual fundraisers, and strip down to your smalls.

Register at www.cupidsundierun.com.au before February 28.

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