The Stan Perron Charitable Foundation donated $221.1 million to fund new Rare Care Comprehensive Centre at PCH

A landmark donation is set to dramatically enhance the diagnosis, treatment, and day-to-day lives of children and families across WA grappling with rare or undiagnosed diseases. The Stan Perron Charitable Foundation on Thursday announced a staggering $221.1 million commitment to the Rare Care Centre — a vital hub located within Perth Children’s Hospital. Established in 2022, the Rare Care Centre has already made strides in supporting WA’s most vulnerable young patients. But according to centre founder Professor Gareth Baynam, the extraordinary pledge will fast-track its impact. “This is an inflection point,” Professor Baynam said. “This is an acceleration. This is a new opportunity to build on an incredible foundation.” Professor Baynam said the far-reaching benefits of the donation would extend beyond hospital walls — touching families, schools, and the broader community. “The whole community will benefit,” he said, highlighting the ripple effect of better care for “our most vulnerable children”. “If we can improve access to education... then when they’re in school, they’re learning, that then frees up parents to look after the other siblings,” he said. “Providing services closer to home means children won’t have to travel so much. Families won’t have to travel so much. Parents won’t need to take time off work. “The centre is really about kids being kids first and parents being parents first.” For WA families like the Gilpins, the Centre has already changed the course of their journey. Ten-year-old Holly Gilpin was diagnosed with CLN5 Batten Disease at the age of six, after nearly two years of uncertainty. “It’s been a long journey,” Holly’s mother Amanda Gilpin said. “She was six when she was diagnosed, but it took nearly two years to get a diagnosis. The family has relied on a clinical trial available only in the United States. For Ms Gilpin, news that the donation could bring such trials closer to home was very emotional. “I got goosebumps, like it’s so exciting,” she said. “To make these things happen in Australia, let alone our own backyard in Western Australia is incredible. “It would be nice for families not have to uproot their entire lives for months, years. “Having that from day one would be incredible for families and hopefully make their duties just that little bit easier... I think that gives us a lot of peace in our journey, no matter what that looks like.”