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Hunter family shares story to help raise awareness

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Thornton’s Cleary family is on a journey most people could not even fathom – three out of four members are living with Neurofibromatosis (NF).

NF is a rare lifelong genetic condition that causes tumours to form on nerves in the body, including the brain and spine.

While it’s a condition not many of us know about, on average every three days a child is born with NF in Australia.

With limited treatment options and no cure, those diagnosed can spend much of their lives watching and waiting for further signs of progression.

“Our NF journey started with my husband Steven, he was the first one in his family to have it and then when you have kids you have a 50% chance of them having it, and both our kids got it,” Gillian Cleary said. 

“Max was diagnosed at six weeks and Tiarney at 12, both with cafe au lait spots, which are birthmark things, and luckily, that’s all that Max ended up with. 

“Steve’s got the neurofibromas which are the external tumours and Tiarney got the internal tumours growing in her head. 

“She got brain cancer when she was three and half and we conquered that one and went into remission but she also has bilateral optic nerve gliomas and once they join together she’ll be blind. 

“Unfortunately, she also has another brain tumour now and it’s terminal.

“When we found out our world shattered, it’s heartbreaking. 

“It’s been a really hard journey.” 

Twelve-year-old Tiarney now has a MRI every three months to monitor the tumour growth and has fortnightly chemotherapy in a bid to buy her some time for more effective treatments to become available. 

When you meet her you wouldn’t know she’s going through such a tough time, she’s a young girl who loves school, her family and spending time with friends. 

“She’s unbelievable,” Gillian said. 

“She’s so strong, she graduated year six this year and had her formal, I’m glad she has those memories.”

For Gillian, the most difficult part is not knowing what is going to happen, she describes it as like living with a ticking time bomb that could go off at any second. 

“It’s never ending for us,” she said.

“You don’t know what is coming around the next corner, it’s scary.

“With our three, they cover each part of NF1 and it’s scary because that’s three different people who have three different parts of this genetic disorder.

“I don’t know what the future holds and how much worse it can get. 

“It’s very much like a ticking time bomb.

“I worry a lot about it and I don’t sleep much because of it.”

The family is sharing their story because they hope for a future where people living with this condition can get the answers they need. 

“I would love to see that in the future they know what is going to happen,” Gillian said. 

“We are lucky that our kids are young enough to hopefully still be here to benefit from research and make it better. 

“When Steve was younger there was nothing around, you just went to the doctor and that’s where it stayed.”

They’re also hoping to create more awareness. 

“If we didn’t know about it, I’d hate to think what would have happened,” Gillian explained. 

“The awareness is really big, I would love to create more awareness about it. 

“If you are not open how do people find out about things?

“If we become a closed book, we’ve got three stages here that people might not know about. 

“It’d be great to have just one person learn something, because they can teach one person and start a chain reaction. 

“It’s just knowledge, don’t think you are better than it, this is something that can get you and can get you big.

“It is really hard but we’re living in our NF world and doing what we can to take each day as it comes. 

“Some days you dread getting up in the morning but other days are great.”

Gillian says she would not be able to get through it all without support from the Children’s Tumour Foundation (CTF). 

The charity’s mission is to provide hope for everyone impacted by NF in Australia by advocating for change, advancing research and empowering the community with the knowledge, connections and support needed at every stage of their journey. 

“If you are having a bad day, they are a place that can help,” Gillian said,

“CTF has been amazing, I could not have gotten through this year without them.”

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