COVID-19 has proven no obstacle for the Berry family’s efforts to help kids with brain cancer, especially following a huge donation from grandma Lesley. Rory Berry, who was diagnosed with “innumerable” brain and spinal tumours at age four, and mum Gemma speak to Luke Voogt about their journey so far.
Young Hamlyn Heights “warrior” Rory Berry, 7, has a simple message for Geelong locals.
“Help fix kids with brain cancer,” he told the Independent on Tuesday.
Rory and his family have supported Robert Connor Dawes Foundation since 2018, when he was diagnosed with “innumerable” brain and spinal tumours.
“It was quite hard,” he remembered.
“I had to go through a lot of chemo.”
Rory was diagnosed with disseminated glioneuronal tumours, a form of a low-grade gliomas, in May 2018 at age four.
Mum Gemma first realised something was wrong when Rory began losing his balance, putting his head down and falling asleep at times that were “not normal” for his age.
They saw a GP on a Friday afternoon “who said, ‘something is not right’” and referred them to a paediatrician on the Monday.
A CT scan at University Hospital Geelong revealed fluid on Rory’s brain and at 9pm that night he was taken to the Royal Children’s Hospital.
“We were in emergency all night,” Gemma said.
Midway through an MRI scan, specialists told Gemma and husband Josh they had discovered “innumerable” tumours.
“The expression ‘all of the blood drains from your body’ is exactly what happened,” she remembered.
“All of sudden, things get really cold and your hands feel all sweaty.”
Just a week after the initial visit to the GP, surgeons operated on a particularly large tumour on Rory’s spinal cord at the base of his neck.
“They managed to remove enough to relieve some of the pressure and then he had chemotherapy, which shrunk it a little bit more,” Gemma said.
“It’s half the size now.”
Surgeons had already inserted a shunt to drain fluid from his brain, which he will need for life, and Rory began a gruelling 68 weeks of chemotherapy for the incurable but treatable condition.
“He would go to hospital every week in a different costume,” Gemma said.
Throughout Rory’s treatment, the Robert Conner Dawes Foundation connected the Berry family with important “moral support” from other families who had experienced similar journeys.
“There’s always someone to talk to and there’s people who have been through what we have and worse – there’s people who have lost children,” Gemma said.
Ironically, Gemma, a keen long-distance runner, had signed up for the foundation’s major fundraiser, Connor’s Run, months before Rory’s diagnosis.
But the event took on a whole new meaning when Gemma ran in it for the first time in September, 2018, to raise money for research into brain cancer.
She has since started her own fundraising team, Rory’s Warriors, which has donated tens of thousands of dollars to the foundation for research and support for families of children with brain cancer.
“I can’t fix Rory but what we do with Rory’s Warriors gives me hope for the future,” she said.
Rory finished his treatment in October, 2019, and while his many tumours remain, they are currently stable.
But Rory struggles with depth perception and sport due to blindness in his left eye from the condition.
The tumours also affect his motor skills and some bodily functions.
“His physical ability to keep up with other kids is always in my mind,” Gemma said.
“I see other families going for bike rides and I think, ‘I wish we could do that.’ I know it’s a small thing to worry about.”
Rory’s condition affects his ability to read, so the cheeky, stubborn and “incredibly strong-willed” youngster gets his Harry Potter fix via audiobook instead.
“I’ve got the whole movie set too,” he said.
Rory and older brother Hayden spent hours together listening to the beloved children’s series, according to Gemma.
“They would just sit there over the summer holidays listening to the Harry Potter books, and then put on their robes and run around with sticks pretending they were wands,” she said.
“He loves to tell a story and have a chat – his personality is 10 times the size of him. Once he gets an idea in his head, there’s no way you can get him to budge.”
And his mum shares his determination in her efforts to raise money for the foundation, despite COVID-19 forcing the cancellation of Conner’s Run this year and last year.
Gemma is instead encouraging locals to run alone at Fyansford common on September 19, or where ever and whenever suits them.
“We have an open-ended starting time, so there’s no crowd. We did that last year,” she said.
“They don’t even have to run,” she added.
“Some people have said, ‘I will read a book every week in September’.”
And Rory’s Warriors have already smashed their $15,000 goal despite the cancellation, raising more than $36,000 so far with generous a $20,000 donation from Gemma’s mum Lesley Meanie.
“It’s one of the worst things you can be told in life – that your is child sick,” Lesley told the Independent.
The long-time artist, who lives in Perth, knows exactly how that feels, after Gemma was born premature with a heart defect.
“It was pretty horrific for my husband and I at the time,” she said.
Her daughter had a hole in her heart that made her “lungs work six times harder than they normally would have to”, Lesley explained.
At age two Gemma underwent open-heart surgery, without which her lungs soon “would have been telling her that she was 80”, Lesley said.
“Since then, nothing has held her back. She’s done so well physically in surf lifesaving, running, trampolining – she’s done it all. She’s just a marvel.”
But decades later, her daughter is suffering the same heartache as her.
“It’s so unfair when a child is four and diagnosed,” Lesley said.
“He knows he’s got brain cancer and there’s nothing he can do about it.
“You wish you could just take the problem away, even to the extent of swapping the diagnosis to yourself.
“I’m 76 now and my husband’s a similar age, and we’ve had a brilliant life.
“It’s a shocking thing to witness your children’s pain and there’s nothing you can do about it.
“But I think Gemma’s coping very well under the circumstances with great support from her husband, Josh, and Hayden.
“He’s the most delightful child and a wonderful big brother to Rory.”
Gemma continues to impress her mother with her fundraising.
“I think what Gemma is doing is fantastic,” Lesley said.
“It’s very heart-warming for us, as Gemma’s parents, that she is getting a lot of support from people who want to help her.”
And Lesley has joined in, donating $20,000 from the proceeds of her book Becoming an Australian: an artist’s journey.
The book documents 52 years as a full-time artist since she migrated from England to Australia in 1969.
“There’s still a few more books to sell,” she said.
“We can’t take Rory’s cancer away, so we look for other ways we can help.
“Brain cancer research is the only avenue we’ve got at the moment.”
At just seven-years-old, her grandson echoes that sentiment.
“I like to raise money for Connor’s Run, so the scientists can figure out a way to stop brain cancer,” Rory said.
To donate visit connorsrun.com/fundraisers/roryswarriors/connors-run or lesleymeaney.com.au
Coles is also supporting Connor’s Run Victoria-wide by selling $2 donation cards in supermarkets and donating 10 cents for every 6 or 12-pack of Coles Bakery cookies sold until September 21.
