Rare care relief for kids in remote areas
Tonya McCusker and Professor Gareth Baynam with Tristan, Florence and Sarah Sommerford © WEST AUSTRALIAN NEWSPAPERS LIMITED
The Child and Adolescent Health Service’s Rare Care Centre, a centre of expertise improving the lives of children, young people and families living with rare and undiagnosed diseases, is set to expand its reach into regional Western Australia thanks to the generous support of the McCusker Charitable Foundation, via the Channel 7 Telethon Trust.
The Rare Care Centre’s Pilbara Hub will be based in the north-west of the state, streamlining access to services and providing comprehensive support for families.
Professor Gareth Baynam, medical director of the Rare Care Centre, said the impact will be tremendous.
“For us to be able to deliver this sort of service in remote Australia will be enormous. It will be truly transformative.”
Florence Sommerford has GRIN2B, a disease so rare that no one else in WA has the condition, and less than 500 people have it worldwide.
Florence’s parents Sarah and Tristan know firsthand how much value and support the Rare Care Centre can offer when navigating the complex health needs of a child with a rare disease.
“It’s already hard, but to then advocate for a child that needs rare care is a massive load to bear,” Sarah said.
“The Rare Care Centre team has pulled us out of a feeling of isolation. They’ve given us hope that someone does care about Florence, and someone does care about a child that is the only one in Western Australia.”
“Having a second Rare Care Centre up north will be life changing for local families in that region.”
McCusker Foundation director Tonya McCusker said Telethon had highlighted the need to support children with rare and undiagnosed diseases.
“So many families up north not only have the challenges of dealing with a child who is unwell – but then they have to travel down to Perth for tests and to see specialists,” she said.
“If you group all the rare diseases together there are thousands of children. If we can shine a spotlight on those conditions, we can help those families.”
Dr Baynam said there were 63,000 children in WA living with a rare disease.
Find out more about the Rare Care Centre’s work. Read their 2022-23 Impact Report.