Nicole Jamieson remembers vividly the moment she knew she would lose her son Toby.
“I went to my son’s bedroom, surrounded by all these teddy bears and lay on his bed,” she said.
“The sound that comes out of a mother, when you know that your son is going to die is a sound that I never want to hear come out of my body again.
“But I know I will one day.”
Toby’s was diagnosed with a rare form of childhood dementia.
Toby’s diagnosis of Cockayne syndrome — a rare form of childhood dementia and the first case in WA — effectively means instead of growing up, Toby, now 10, is growing “down”, Ms Jamieson said.
He has a life expectancy of just 12.
There wasn’t a dry eye in the room as the mother of three sat before WA business leaders and philanthropists at the Leeuwin Lunch for Telethon on Sunday and opened up about her son’s diagnosis.
Her powerful words pushed those watching and listening into action.
Rod and Carol Jones. Credit: Alan Chau/The West Australian
Across the day, the group collectively raised a record $5.95 million for Telethon — including an anonymous $3m from a donor moved by Ms Jamieson’s story.
“It had me in tears,” she said of the mystery benefactor.
“It just blows my mind, and as a parent, I don’t think words could ever articulate how grateful I feel.
“I feel like I can’t save my child’s life, but I can try to make things better for him and for kids like him.
“If sharing my story has encouraged somebody to want to give that amount of money then I’m finding purpose in pain.”
Against the backdrop of a cold, rainy day, Leeuwin Estate was filled with the warmth of Telethon’s most generous supporters opening their hearts and wallets with a shared purpose — to help WA’s sick kids.
Starting early at Network Aviation’s terminal, they were flown to Busselton courtesy of Qantas, and travelled with South West Coach Lines to Leeuwin Estate, with karaoke starring Human Nature’s Phil Burton.
Larry Emdur and Phil Burton with Fat Cat. Credit: Alan Chau/The West Australian
Burton was joined by Gold Logie winner Larry Emdur, who made a heartfelt appeal to the potential donors on his first trip to the State’s South West.
“Every dollar counts. But when you start to talk about the dollars that are in here today and the donations that will be made today . . . It’s world changing. It’s certainly life changing for so many people,” Emdur said.
The annual lunch, which features fine wine and food provided by Leeuwin Estate’s Horgan Family, who also donated $50,000 through their foundation, is one of the philanthropic highlights of the year in the lead-up to Telethon.
The feverish auction bidding of Matador Capitals founder Grant Davey led the pack on many items.
Grant Davey and Linda Taddei. Credit: Alan Chau/The West Australian
“It’s not about nice champagne or wine, you can get that anywhere in the world. This is all about the children and what they go through,” Mr Davey said.
“These kids go through hell, their parents go through hell, and it’s all about how we can make their lives better.
“That’s what Leeuwin Lunch is all about, and that’s what Telethon’s all about.”
Milvia and Tony Poli. Picture: Alan Chau – The West Australian.
Steve and Susanne Gulvin, Rod and Carol Jones, Elizabeth Perron, Tony and Milvia Poli, Frank and Sasha Agostino, and the Rambal family all dug deep, driven by the emotion of the day.
“The warmth that we get from the people around us, and particularly the Telethon family, has promoted us to support them even more,” Mrs Gulvin said.
“What I love about Telethon is I know that every single dollar is being spent the way it should be spent.”
Steve and Susanne Gulvin. Credit: Alan Chau/The West Australian
Bronte and Colleen Howson, of Audi Centre Perth, donated a vehicle for auction, which originally sold for $105,000 to Mr Davey before he donated it for reauction.
Colleen and Bronte Howson, of Audi Centre Perth. Picture: Alan Chau – The West Australian.
BHP iron ore president Tim Day led the organisation’s contribution of more than $400,000 for wish-list items, including 13 “giraffe warmers” — a capsule for premature babies — for Perth hospitals.
“For a business like ours, it represents all the hard work of all our team members put together,” Mr Day said.
Toby. Credit: Unknown/Supplied
“We put the money together overall as a company, and then we obviously give it to charity, and it’s just such a good result for the kids in WA.”
At the conclusion of the day, the crowd was surprised with a message from Bronwyn Doak, who had spoken to the lunch in 2021.
The story of her sons Eamon and Kealan — who have Usher syndrome, a genetic condition characterised by hearing an vision loss — prompted Rhonda Wyllie to purchase a piece of equipment that last week had identified 10 potential treatments, with two showing great promise.
Nicole Jamieson spoke at the Leeuwin lunch about her son Toby’s devastating diagnosis with a rare form of childhood dementia. Credit: Unknown/Supplied
“Our journey is now part of a real global scientific progress, but more than all of this gave us time, gave us possibility, and it gave me back something I didn’t think I’d feel again — hope,” Mrs Doak said.
“What you made possible … it’s changing the future of medicine.
“From my family and from every parent who lies awake, hoping for a miracle, know that what you are about to do today changes lives.”
By Dylan Caporn.
First published by The West Australian.