Based on an interview with Zion and his mum Angela (Queensland, February 2026).

Zion is 18 years old and currently lives in Queensland with his family. He was born in Sydney and was diagnosed with Tuberous Sclerosis Complex (TSC) at the age of 9, after experiencing a seizure shortly after his family had moved suburbs. For Zion and his family, the diagnosis came quickly, but brought with it a wave of uncertainty and adjustment.

Zion’s mum, Angela, recalls how overwhelming those early weeks were. “I had never seen a seizure before,” she says. “There was so much uncertainty; not just for Zion, but for our whole family.” Scans revealed lesions in Zion’s brain and kidneys, and genetic testing confirmed a spontaneous TSC1 mutation. Like many families, Angela and her family were surprised to learn that TSC can occur without any prior family history.

Angela remembers being advised not to Google, and instead being directed to TSA, which became an important source of support during those early years. Explaining the condition to other people was also complex; it wasn’t “just epilepsy,” and that distinction often felt hard to communicate.

For Zion, the hardest part of the diagnosis wasn’t the scans or hospital visits; it was what TSC stopped him from doing. Before his diagnosis, he loved surfing and competed regularly. Afterward, he was told it was too dangerous to continue. “I spent a lot of time just sitting on the beach watching my brother surf,” Zion says. “I felt like I couldn’t be part of it anymore.” But, one day, Zion bought a second-hand camera for $150. This became a decision that would open up a new world for him. 

Through the lens, Zion found a way to reconnect with the ocean and the sport he loved. It was the beginning of his creative journey. He began filming surf documentaries and soon found immense success, placing second at the Noosa International Surfer Film Festival, being shortlisted for Best National Student at the Heart of Gold International Film Festival, and winning a prize at the STUFFit International Student Film Festival. Seeing his film play on the cinema screen for the first time remains, he says, one of his proudest moments.

Zion admits that living with TSC hasn’t been easy. Medications left him feeling tired, and school could be particularly challenging. Zion and his family found themselves having to repeatedly explain his condition to teachers and administrators each year. Although staff had good intentions, their concerns and safety measures often made him feel singled out. He remembers being separated during a school colour run because it was assumed that because of his medical condition he couldn’t participate, an experience that made him feel set apart from other kids. School camps were another challenge. For one Year 6 trip, doctors were so reluctant to let him attend alone, that Angela stayed nearby so Zion could feel safe. Despite the challenges, Zion just wanted what most kids want – to be treated the same as everyone else.

A move to Queensland at the age of 12 marked a turning point in Zion’s journey. For the first time, he felt truly supported by the school system. A dedicated school nurse co-ordinated his care, removing the burden of constant explanation to school staff.  “I finally felt understood,” he says. 

Zion has now been seizure-free for 4 years. He currently balances work at Coles and NEP (a sports broadcaster) while freelancing in film. Alongside his passion for and success in film-making, Zion has also thrived academically. While still in high school, he was selected for the Head Start program, which allows capable students to begin university-level courses early. He was one of only two students at his school accepted into the program and attended one day a week from Year 10 to Year 12. During that time, he completed 4 courses with credit: 3D Game Art & Design, Creative Writing, Digital Journalism, and Psychology. Zion believes spending time in a university environment helped him develop maturity and confidence, and he has found it refreshing to learn alongside adults who share his curiosity and love of learning. In late 2025, Zion travelled to Japan with a friend, which was his first independent overseas trip, something he is incredibly proud of.

This year, he was awarded the school’s “Arty” for Most Likely to Succeed in His Career, complete with a miniature Oscar. “It’s been such a beautiful full circle for him at a school with such great support,” Angela says. Zion and Angela are both passionate about TSC awareness and advocacy. From participating in fundraising runs to engaging in Purple Day events, they focus on finding positives and helping others understand that TSC is much more than what people can see on the surface. “People often say I look normal,’” Zion reflects, “but there’s a lot about living with TSC that they don’t see.”

Zion’s advice to other people living with TSC is simple, but powerful: “If you can, don’t let your TSC stop you from doing the things you want to do. Find creative outlets and things you enjoy, and hold onto them.”