When you’re a kid, support can feel more visible – school structures, family routines, children’s services designed around you. But as young people living with neuromuscular conditions grow into adulthood, that support can thin out fast, right when life starts asking more of you.
Jax and Sam understand that shift.
They’re mates. The kind who’ve crossed paths for years through MDNSW programs, from kids camps to Young Adults’ Retreat. Their stories aren’t identical, but they share the same truth:
When you’re surrounded by people who understand, you can finally stop bracing yourself and start becoming who you are.
Jax is 20 now and he jokes that he doesn’t even know when his MDNSW journey began.
“There are photos of me with little hats with MD branding on it when I was like a two‑year‑old,” he says. “I just showed up one day and I’ve never left.”
His first camp was around 12. He’d heard about it from mates and arrived excited. What he found was bigger than the activities.
“The people here are amazing… and you have the ability to just be 100% you.”
That feeling carried him through years of camps and into Young Adults’ Retreats, which he describes as the next stage. More laid back, more grown-up and built for a different stage of life. A place that lets you practise independence, in your own way and at your own pace.
Sam’s path started differently but landed in the same place. Growing up in regional NSW, opportunities to connect with other young people living with neuromuscular conditions were limited. His parents found MDNSW online and brought him along to his first camp when he was nine. He came once a year and with each return, he grew more comfortable. A little more confident. A little more relaxed in himself. By the time he aged into the Young Adults program, he found a space where the friendships he’d grown up with could continue, in a way that matched where he was at in life.
For Sam, Young Adults’ Retreat matters because it’s not just ‘becoming an adult.’ It’s becoming an adult with people who get it.
“You get to become an adult in a safe environment. You’re with all your friends who are in the same situation… and you get to experience that and grow from that with each other.”
He describes his favourite part simply: being able to socialise without needing to take people through the full backstory of your day-to-day reality.
“We just get it,” Sam says.
That’s what sits at the heart of this program. It’s the rare relief of being in a room where you don’t have to translate yourself.
Jax puts it in his own words: “It’s the time when me and my mates… we’re not in wheelchairs anymore. We’re just us. We are purely just the best versions of ourselves.”
For Jax and Sam, Young Adults’ Retreat is a place where friendships keep going, where independence builds naturally and where young people can keep showing up as themselves.
No explaining. No apologising.
Just being 100% themselves.
