28/10/2025
5-year-old Lily lives with spina bifida, a congenital condition where the spine and spinal cord don’t form properly – but she’s dancing away all odds.
At just 1-week-old, Lily underwent surgery in the Neonatal Intensive Care Unit (NICU) at the Women's and Children's Health Network to repair a fatty mass attached to her spinal cord.
Since then, she’s had annual MRIs, multiple hospital stays, and further surgery to detether her spinal cord.
“She does calisthenics and does solos twice a year in the inclusion section. She shines on stage and dances her little heart out,” says Lily’s mum, Renée.
“Lily has a huge personality and a very quick wit. She’s already decided that when she grows up, she wants to be a comedian. But in her words – ‘a sit down comedian, not a stand up one - because I have a wheelchair’.”
Renée’s advice to other parents is simple, “Children with spina bifida can live such full, fun and joyful lives. When Lily was diagnosed, we didn’t know what her future would hold. Looking back, I wish we hadn’t spent so much time focused on the ‘what-if’s’.”
“Your child deserves the same opportunities as everyone else and when given the chance, they’ll show you how much they’re capable of. They’ll have plenty of people assuming they can’t do something - so believe in them. Support their passions and celebrate every win, big or small.”
Thank you for sharing your story, Renée and Lily. 💜