Can Leo’s way of seeing help you?
From lived experience to awareness and action
The day after surgery
“Nothing will stop you from being you.”
Leo says it plainly, like it’s a fact. It’s something he knows.
At just 12 years old, he’s wise beyond his years. He sits on his living room couch, chatting away with infectious positivity. It’s hard to believe he had eye surgery just the day before.
A life shaped by glaucoma (but not defined by it)
Leo was born with congenital glaucoma. He has lost count of the eye surgeries he’s had; it’s well over 50 now. Eye drops, hundreds of hospital visits, and days off school are part of his world. But when Leo talks about his life, that’s not where he begins…
He starts with details. The practical stuff.
What the procedure is really like
For his most recent procedure, Leo didn’t have to undergo general anaesthetic. He sat on a chair in his specialist’s office like a champ.
He explains how the needle works. “But don’t worry”, he says, reassuringly. “The local anaesthetic makes everything numb so it doesn’t hurt, even though you can still feel the pressure”. He talks about the gowns that never feel comfortable, and the moment when fear feels worse before anything happens.
“The closer you get to it, the more it builds,” he says. “That’s the worst part of it, then it’s over very quickly.” Leo is very analytical when describing the difference.
When fear builds: fear and dread
“Fear is being scared of something that’s happening,” Leo explains. “Dread is the feeling when something will happen, and you’re not ready for it.”
Then he shares something that feels important: “You can’t just do it,” he says. “That can suppress your emotions.”
The power of trust (and being understood)
Listening to Leo, trust matters. It grows when things are explained, when questions are answered, and when health professionals take the time to help him understand what’s happening.
“You have to trust your doctor,” Leo says. “Compassion and empathy really matter.” That trust helps the operating theatre feel less frightening when dread builds.
What also helps is visualising what comes after. “I picture that when the surgery’s over, my eyesight will be better”, he says.
And he doesn’t face it alone. There are loved ones around him, like his mum, dad, and stepdad. He also has his little sister, Dot, and his Russian blue cat, Bella. Their presence helps steady him during hard times.
Leo is still battling to preserve the sight he has left, while remaining positive and optimistic about the future.
What Leo lives for
For Leo, being himself means doing what he loves.
Leo expresses himself with music. He loves to sing and writes his own music. Leo lives for being on stage performing, whether it’s acting, singing or comedy. Anything to make people laugh or entertain them.
“I just want to bring people happiness,” he says. Glaucoma is part of Leo’s life. It isn’t the centre of it.
Turning his story into support for others
Leo also talks openly about glaucoma, helping others understand what it’s like to live with it. Last year, he ran a simple awareness activity at school. His classmates wore glaucoma simulation glasses and were challenged to complete a short colouring task.
“It wasn’t about colouring within the lines perfectly. It was about noticing what changed when your sight was taken away”.
“I wanted people to understand how much you need your eyes,” Leo says.
For Leo, awareness is personal. And it’s shared. It’s how lived experience becomes something that helps other people feel less alone.
Leo’s story isn’t about pushing through or being brave for the sake of it. It’s about letting yourself feel what’s hard, trusting the people caring for you, and holding on to who you are along the way.
Because nothing about glaucoma takes away your right to be yourself.
This is where Glaucoma NZ comes in.
By supporting Glaucoma NZ, you help ensure people affected by glaucoma have access to trusted information, support, and a community that understands what they’re facing. You help turn lived experience into awareness and awareness into action.
Donate to Glaucoma NZ to encourage early eye checks, support families, and help ensure no one faces glaucoma alone.