In early 2025, an innovative telehealth initiative brought children with Oculocutaneous Albinism (OCA) together from across Queensland - many of them meeting peers with the same condition for the very first time.
The idea for the group, called Visionaries, was born from a simple but powerful conversation with a young person living in a remote community. After meeting another child with albinism during a family trip, she shared just how meaningful that connection had been - and how rare such opportunities were.
Her story inspired a virtual therapy group designed specifically for children aged 7 to 12 with OCA, with the goal of building connection, understanding and emotional confidence.
Creating a space to connect
Delivered over four weeks via telehealth, Visionaries was carefully designed to support children with low vision and other challenges related to OCA. The program blended learning with fun, creativity and emotional safety.
Each week, children gathered online from the comfort of their homes, supported by therapists who shaped a thoughtful, age-appropriate experience. Sessions focused on:
- Understanding their diagnosis in a way that was empowering and accessible.
- Forming meaningful connections through games, conversations and shared storytelling.
- Developing social and emotional skills, including how to express feelings and interpret social cues.
- Exploring self-advocacy, building confidence to speak up and ask for support.
- Learning from each other, as children shared personal strategies for navigating challenges.
Vision Australia’s Life Ready approach provided the foundation for each session. Families were also actively involved behind the scenes, helping their children participate fully and comfortably.
A safe place to be understood
What made Visionaries so impactful was not just the curriculum, but the care put into making every child feel heard, seen and valued. It became a space where kids could ask the questions they might not ask anywhere else and connect with others who truly understood their experience.
The feedback spoke volumes: children were excited to attend each week, formed real bonds with peers, and asked if the group could continue beyond the original four-week format.
Why it matters
Visionaries highlighted how powerful connection can be, especially for children living with rare or isolating conditions. Even in a virtual space, the chance to feel understood, to share openly and to be part of a community made a lasting difference.
This program is a reminder that sometimes, the most meaningful support comes from simply being with others who “get it.” And thanks to telehealth, those connections are more possible than ever - no matter where a child lives.
