Every day, across NSW, our Uniting Local Area Coordinators listen to the lived experiences of thousands of people living with disability, and their families – and empower them to bring their hopes and dreams to life.
Among them, Lillian Rowsell, who lives with her parents, Chris and Andrea, in the Hunter.
When they began planning for their daughter’s life after high school, they faced questions that sparked a bold idea – one that many might have dismissed as too ambitious. Thanks to the support of Uniting Local Area Coordination and the NDIS, it became reality.
Lillian was born with the extremely rare Hemimegalaencephaly, which means half of her brain was enlarged and deformed. “All of a sudden it was like, ‘Oh, we’ve got this disabled daughter that needs care,” says Chris, a paper-truck driver who lives in Old Bar, on the mid-north coast of NSW, with his wife, Andrea, who owns a ballet school, and Lillian. “Every night for the first 12 months of Lillian’s life, Andrea slept on a fold-out beside her bed at Westmead Hospital.”
At only six months of age, Lillian underwent a 10-hour hemispherectomy to remove half of her brain. As Lillian grew up, she and her parents learned together how to navigate the challenges Hemimegalaencephaly presented: the condition affects her vision, cognitive function and mobility, she requires round-the-clock care. “She can communicate, and she learns from repetition,” explains Chris. “The routine of life is what teaches her.”
With her family’s loving care, and the support of educators and support workers, Lillian completed high school, which is when Chris and Andrea began to consider the next chapter in their daughter’s life. Enter, “The University of Life,” Chris’s name for a customised, educational experience for Lillian that would meet all her post-school requirements and equip her with life skills and experiences.
The key to realising it was NDIS approval for one-on-one support for Lillian six hours a day. “We just thought, ‘Oh my God, this is it! This is our dream!” says Chris, who found the perfect location for Lillian’s university – a self-contained flat on his father’s nearby property. “And that’s where she goes every day,” he says.
Now in its seventh year, the University of Life “is a huge success,” says Chris. Lillian’s curriculum includes cooking, excursions, physio, swimming and music. “Dad is now the head lecturer of the music faculty of the University of Life,” says Chris, with a smile.
For Lillian’s mum and dad, their dream was simple, but it took a village to bring it to life: “Every day, she gets to get up and like every other person, go to something that fulfills her for the day,” says Andrea. “It gives her a purpose.”
To find out if Uniting LAC can support you to meet your goals:
Call 1300 453 303 between 9:00 AM to 5:00 PM Monday to Friday.
Email [email protected]