Advocating for inclusion

Children's Tumour Foundation
Courageous. Empathetic. Admirable.

Amy O’Rourke’s son William has Neurofibromatosis (NF), a condition that causes benign and malignant tumours to form throughout the central nervous system.

In his case, William has a tumour on his optic nerve which requires 6-monthly MRIs under general anaesthetic to monitor and the potential for many more in his lifetime.

As a mental health nurse, Amy’s first instinct has been to fight for greater understanding of the condition and to advocate for him and other families living with NF.

Despite being a busy Mum and working full-time for Queensland Health, Amy has taken on a leading role with the Children’s Tumour Foundation who represent families with NF.

“I am passionate about our community showing and teaching all children to be kind; teaching them that they deserve to be loved and feel safe”, says Amy.

Amy has been able to build a support network for the NF community on the Gold Coast, while also helping to unite families from across the state; promoting inclusion and creating a sense of belonging for NF families.

“I use my time to help others understand NF, to fundraise for a cure and to support families of newly diagnosed children in particular. It is a lonely journey, but I hope my positivity helps others to get through the tough times," Amy says. "I take one day at a time, and commit to enjoying every second that I am privileged to share with my little angel William."

Westfield Local Heroes are nominated and voted for by their communities, with the three top finalists per Westfield centre each awarded a $10,000 grant for their affiliated organisation. The Children's Tumour Foundation will create a new patient registry to help identify both adults and children who would benefit from clinical and support services, as well as future research initiatives.

For further information on the Westfield Local Heroes program, click here