A festive boost for the Rare Care Centre.
- Perth Children's Hospital Foundation
A festive boost for the Rare Care Centre.
- Perth Children's Hospital Foundation
The Rare Care Centre has received a generous $150,000 boost, thanks to the success of this year’s Cherry Auction, where the prize box of cherries sold for an incredible $85,000.
Committed to improving care pathways, the Rare Care Centre plays a growing role in supporting, advocating for, and conducting research on behalf of the 63,000 kids and their families living with rare and undiagnosed diseases in WA.
The 2024 Cherry Prince, Mitchell and Princess, Savannah, both live with rare conditions and benefit from the Centre’s support.
Savannah is one of only a few people in Australia with TRAPPC9, while Mitchell has Pallister-Killian Syndrome, a rare condition that requires ongoing, specialised care.
For both Savannah and Mitchell’s families, the Centre provides essential resources and a sense of community, helping them navigate the complex journey of diagnosis, treatment, and care coordination.
PCHF CEO Carrick Robinson said: “Now in its 32nd year, the iconic Perth Cherry Auction highlights the generosity of WA’s local market community, who continue to show unwavering support for kids with rare and undiagnosed conditions, like Mitchell and Savannah, ensuring they get the care and support they deserve.”
Savannah’s Journey with TRAPPC9.
Savannah, 7, is one of only a handful of people in the world living with TRAPPC9 deficiency, a rare genetic condition that affects her cognitive and motor development. Her path to diagnosis was long and uncertain.
Savannah’s mum, Trinh, said: “There’s only one person in WA with the condition, and just three kids in all of Australia. It’s rare, and that can make it really hard to find the support Savannah needs.”
Savannah has been attending the Rare Care Centre since October 2024. The Centre provides a team of healthcare professionals familiar with managing rare conditions, ensuring Savannah receives the specialised care she needs. For Trinh, the Centre’s sense of community and understanding has made all the difference.
“Science has come a long way, but when your voice is so small, it’s hard to get heard. When you’re dealing with something undiagnosed or rare, you’re always looking for answers that aren’t always there,” she said.
“We just want to make sure Savannah, and others like her, have a voice and a place in the world. People with rare conditions don’t want to be seen as different, they just want to be part of the community.”
Mitchell: Overcoming the Odds with Pallister-Killian Syndrome.
Born prematurely, Mitchell spent the first two weeks of his life in PCH’s Neonatal Intensive Care Unit (NICU). His parents were told he wouldn’t make it past the age of five, but Mitchell defied those expectations, reaching his sixth birthday against all odds.
Living with Pallister-Killian Syndrome (PKS), a rare mosaic genetic condition that affects fewer than 500 people worldwide, Mitchell faces a range of unpredictable symptoms including seizures, intellectual disabilities, and physical challenges. Mitchell’s condition is further complicated by type 1 diabetes (T1D) and epilepsy.
Navigating Mitchell’s medical needs has been a full-time responsibility for his family. With numerous surgeries required and heightened risks during anaesthesia, the coordination of his care has been a challenge.
“Rare Care has been an essential resource and prime point of contact to help us coordinate the multiple different healthcare teams that need to be engaged when Mitchell undergoes a surgery or procedure,” said Jaya.
“Being a carer for a child with a rare or undiagnosed disease, there’s not a lot of support. It can often feel like you’re on your own, and that’s why dedicated initiatives like the Rare Care Centre are so vital for families like ours.”
Congratulations to this year’s Cherry King, Luciano Monte, from Monte Farms. The Cherry Auction is run and hosted by Market West and Perth Markets Group Limited with support from the Cherry Growers Association.
Thanks also to Mineral Resources, PCHF’s Principal Partner of the Clinical Centre of Rare and Undiagnosed Diseases.
