Tristram’s story: Living with Spinal Muscular Atrophy
Tristram was around 18 months old when his parents Lorna and Ian noticed that he was not meeting his physical milestones. Activities like walking at the same pace as others became challenging, and he began to stumble and fall over.
It was the early nineties when information and knowledge about SMA was very limited. His parents searched for answers and took him to see various doctors, all of whom had not experienced SMA and did not know what could be wrong.
Tristram became progressively weaker over time and began using a wheelchair at the age of three. It was not until he was seven years old when he was diagnosed with SMA type 2 by his neurologist.
“The uncertainty was difficult for Mum and Dad. When I was finally diagnosed, it really made sense why I was getting weaker and why I was the way that I was.
"I’ve not known any different, I don’t remember walking. It’s empowering in a way, because I am who I am, and I get on with it.”
Now, as an adult, Tristram travels the world representing Australia as an elite Powerchair Football athlete. He enjoys what he describes as a “very normal life” – exploring the world, having fun with his mates, cooking, working, playing sport and aspiring to be in a rock band. He is also a fierce advocate for the SMA community and disability more broadly.
SMA is a rare, debilitating, and potentially fatal condition that causes a loss of nerve cells in the spine and leads to progressive muscle wastage throughout the body.1,2
It is an incurable genetic disease caused by a faulty or absent survival motor neuron one (SMN1) gene.3 This gene produces a protein called survival motor neuron (SMN) protein which is critical to the function of the nerves that control muscles. Without the SMN protein, those nerve cells cannot function properly, and they eventually die, leading to debilitating and sometimes fatal muscle weakness.4
In Australia, one in 10,000 births in Australia are affected by SMA and until the discovery, development and introduction of medicines to treat SMA, the disease was the number one genetic cause of death in babies under two years of age.5
Prior to Tristram’s diagnosis with SMA, his family did not know anyone who lived with the condition. He was the first in his family to have a disability. His parents discovered advocacy groups like SMA Australia and came to understand what it meant to live with SMA, and what the future could hold.
Tristram always knew that he wanted to be an athlete. As a child, he would watch his friends participate in sporting carnivals and bring trophies home. He wanted to do the same but at times felt that he was not strong enough.
He began his sporting career playing powerchair hockey and loved the game. Although he could intellectually match his competitors, it was his strength that ultimately hindered his ability to play an even game and so he retired.
“I remember my cousin giving me one of her trophies because she felt sorry for me. She felt that I couldn't do the same as others.”
Tristram then discovered powerchair football and fell in love with the game for its intensive strategy, strong competition and level playing field. Over a decade later, he has represented Australia as a member of Australia’s national team, the Poweroos.
With a trophy cabinet that is now spilling over, he has given the trophy back to his cousin.
“There are so many assumptions made about people with disabilities. That we're fragile, we wrap ourselves up in cotton wool. Powerchair football is a very physical sport, it’s exercise for us. It's a case of putting your mind to it and you get tired and fatigued strategising all the time.
“It can be a challenge because people don't know about disability. It’s hard to put things in place if in their everyday life they don't encounter those same challenges.
“The big one is physical access. That’s a challenge. It's also the way in which people view disabilities. They might make assumptions or treat me like I'm not able to have a proper conversation with them.
“No one knows about SMA, and so a lot of the time, we're the ones educating people about what my condition means. That’s a challenge and often, quite difficult.”
When Tristram finished high school and was deciding where to undertake his undergraduate university degree, he was limited in his choices because of the varying levels of accessibility at different institutions.
“It’s about educating those people. I'm lucky enough to run school programs where we talk to kids about disability and those kids will be the next generation of engineers and doctors, and in ten- or fifteen-years’ time will be better for having that knowledge in their own lives.
“I'm so proud of the SMA community for not letting SMA define them. We are humans, we have interests and passions and hobbies like everyone else. And that normalises disability, which means that the next generation with SMA has a much, much easier go in life.
“I think that so often people get the bad news and think that that's their lot in life. But the squeaky wheel gets the grease. Fight for what you want and talk through those challenges. You're entitled to that support and help and once you realise that life gets easier.
“I've got an amazing team of support workers and carers who assist me with those day-to-day aspects that I can't do independently. They’re my best mates too.
“It's great that there are so many people that have the knowledge, expertise, and commitment to the SMA community showing that I'm not the only one in the fight and that people are helping us normalise disability.
“I have so many things I'm excited about coming up in the future. I love cooking and love music. I've very embarrassingly started taking singing lessons because I want to be in a rock band. I mean, who doesn't want to be in a rock band?
“I can cook, I can sing and can play sport… happy days.”