Sweet funding boost for rare diseases.
- Perth Children's Hospital Foundation
Sweet funding boost for rare diseases.
- Perth Children's Hospital Foundation
Meet our Cherry Auction Ambassadors, Toby (9) and Ava (10), who both live with a rare disease and receive support through the Rare Care Centre at Perth Children’s Hospital.
An iconic WA tradition, the Cherry Auction raised an incredible $120,000 in its 31st year, as the first cherries of the season went under the hammer at Perth Markets.
Funds raised for PCHF at the Cherry Auction benefit the Rare Care Centre, which coordinates research and advanced diagnostic approaches for the 63,000 WA kids, like Toby and Ava, with rare and undiagnosed diseases.
Toby has Cockayne syndrome, a degenerative DNA repair disorder that causes rapid ageing, while Ava has a mutation on the GNAS gene that affects her growth.
Meet our Cherry Auction Ambassadors.
Ava.
Ava’s mum, Katie, said: “Having a mutation on the GNAS gene mainly affects Ava’s growth. The first signs that something was wrong appeared while she was still in utero. At a younger age, it mostly showed because she wasn’t growing. While other kids would be growing, height-wise, weight-wise, she just wasn’t.
Katie and Ava have been seeing the team at PCH’s Rare Care Centre for over a year.
“With Ava’s disorder we see so many specialists, from endocrinologists to geneticists and neurologists. So, it’s been a huge help for the team at the Rare Care Centre to fill those gaps for us, rather than me trying to connect with every single doctor and get them all on the same page.
“It’s just such a weight off your shoulders to have someone in your corner backing you,” Katie said. “Having a child with a rare or undiagnosed disease is hard. So, I would encourage people to just lead with kindness, because there’s a lot of things happening behind-the-scenes for families like ours.”
Toby.
Meanwhile, Toby lives with Cockayne syndrome, a degenerative DNA repair disorder that causes rapid ageing.
An extremely rare form of childhood dementia, Cockayne syndrome affects Toby’s brain, body, and all aspects of his health and development, with symptoms expected to worsen over the course of his life.
Toby is one of only seven Cockayne syndrome cases nationally and is the only person with Cockayne syndrome in WA.
Toby’s mum, Nicole, said: “There are no medical personnel here in Australia that specialise in Cockayne syndrome, and the only major hub for medical and family support is in the UK via Amy and Friends.
“When I go to medical appointments, I bring a big file with all the relevant literature to give to doctors because no one’s heard of Cockayne syndrome, which can be really scary when health decisions are being made for your child.
“I’m very thankful for the Rare Care Centre. For patients and their families who visit the Centre, while our syndromes and challenges might be different, we all fit under that umbrella of rare disease. That’s what brings us together. I’m really looking forward to seeing how the Rare Care Centre’s services can be expanded to support families as it continues to grow and develop.
For example, a streamlined appointment system would result in kids missing less school and social events, while allowing parents more opportunities to participate in the workforce and have a life outside of their child’s diagnosis.”
In 2023, Linh Truong of All States Farms was crowned the event’s first ever Cherry Queen, with the 5kg prize box of cherries from Donnybrook’s Sweet Cherry Valley selling for a whopping $75,000. The bid was a five-way joint effort by All States Farms, Galati Group, Erceg Holdings, Karragullen Cool Storage and M & G Monte & Son.
The Cherry Auction is run and hosted by Market West and Perth Markets Group Limited and supported by the Cherry Growers Association.
Thanks also to Mineral Resources, PCHF’s Principal Partner of the Clinical Centre of Rare and Undiagnosed Diseases.
