blog
Starting My Journey
by Matt Cameron
December 15, 2025
I’m currently 28 years old. I was born and raised in Newcastle, New South Wales (Australia), but I currently live in Sydney. I was diagnosed with Usher syndrome Type 2, which means I have the typical moderate/severe hearing loss from birth along with roughly four degrees of that “oh so sweet” peripheral vision loss. Pressing fast forward on my early childhood, my parents didn’t realize I was hearing impaired until I was two and a half. While large hearing aids on a small head might make for a great photo, the hearing loss itself didn’t significantly affect how I functioned day-to-day. Everything changed in year 5 (5th grade). I have a vivid memory of it being 10 minutes until the final bell; my right eye was itching, so I rubbed it, and suddenly a bright, thick, matte white line flashed in my left eye. After three retinal tears, painful dilating eye drops, a two-hour surgery, and uncomfortable but meaningful testing, I was diagnosed with Usher syndrome. I was 12. Did the news confuse me? Yes. Did I cry out of fear and uncertainty? Absolutely. However, this was the start of a journey I would not trade the world for.
Matt holding up the Australia Camp jumper (hoodie)
Matt in the running portion of a triathlon
Sports Are My Life
Football, athletics, swimming, hockey, touch footy, cricket, cross country, netball, you name the common sports, and I most likely played it. Sport was all I knew. Having an academic focus at school was not for me, though I tried. Lunchtime football or cricket with my mates was all I would look forward to! I had a couple of achievements competing as a hearing-impaired athlete but never truly capitalized on it. The shift happened in 2015. Having to stop playing football was heartbreaking, and the same goes for cricket. I was never the top player, but I always played for the love of the game. Then, my special education teacher was notified of a sport called ‘Goalball’ that was happening up the road from my home. This, 4 years after my diagnosis, was the first time I met someone else who had Retinitis Pigmentosa.
After playing a year of Goalball, the hearing aspect became a significant difficulty. The game is played in a fast-paced environment, and the need for directional hearing was a constant struggle for me. By the time I could figure out exactly where the ball was using sound, it was often too late to react and make a play. The challenges in Goalball led to a new opportunity when one of my teammates uttered the words “Blind Cricket.” Boy, has that opened a world I never saw coming! I’ve been on seven international tours, traveling to India, England, and Dubai, playing against nine different countries. I’ve achieved personal goals of centuries and wickets while achieving the main focus of team success, with series wins against New Zealand and our biggest rivals, England. The Paralympics are now a strong ambition I am chasing through Para-Triathlon, it is early days yet, though.
Matt in canary yellow uniform, down on his right knee playing a traditional blind cricket sweep shot
My Relationship With Usher Syndrome
My relationship with Usher syndrome is very personal and private. I don’t consider myself a conventional advocate or public spokesperson; I prefer to integrate the condition quietly into my daily life rather than highlight it constantly I have complete respect for those who actively choose to advocate and see the world in a different way, and I am grateful for their advocacy efforts and the work they do for the community. To me, Usher syndrome is just another part of my personality. I don’t typically endorse or advocate my slightly introverted traits, so going around regularly advocating and educating others about Usher syndrome is not a common theme. Will I advocate the condition and help the world understand what it is as best as I can? Yes! Do I openly seek fundraising and open forums/events to bring light to the condition? Not really. This is not a statement for me to say I am “ashamed” of the condition; it is just how I view the situation on a very personal level. I would almost say that I am very reserved on how I portray myself in the public eye. I do love going to family information sessions or Usher Camps and playing my part in showcasing the condition as it is, but when it comes to day-to-day life, talking to local politicians or creating events based on Usher syndrome is quite low on my priority list. I am always forever thankful for those who do put in the effort to organize those events and are constantly advocating for themselves in their regular lives!
Matt public speaking when he was 19 years old
Similar to my approach to public advocacy, I also hold a reserved position on the testing aspect of my condition. This means I choose not to participate in any test trials for cures or physical (even altered) investigations. I want to be clear that I have strong respect for those who are willing to put their current situation at risk for the greater cure of the disease, and I am supportive of the Usher Syndrome Society’s efforts to find a cure, as their work gives me the peace of mind to live my life to the fullest. However, you could say I am selfish when it comes to testing on my own sight and hearing. I do not have a lot of vision left, but what I do have is very usable, and the thought of playing around with the remains is not something I feel I will ever be comfortable with. My focus in life is working, spending time with those I care about, playing sports, and enjoying my hobbies, not my eyes.
Making Connections Is Key
Considering it took me four years post-diagnosis to meet a fellow RP sufferer, and nearly six years to meet a fellow person with Usher syndrome, I realize now that I didn’t know what I was missing. I found that community, where the questions and the relatability truly came to light! The night vision, the wet floor signs, and forever losing an item on the open floor! Being around those who just ‘get it’ is refreshing to me. Attending my first USHthis Camp in Michigan in 2024 was the first time I could be myself with the syndrome. And I experienced it again at the Australian Camp. I was able to just talk about life as anyone else in the world would, not having to explain what it is like, what accommodations I need, and the barriers I face. The bond I have grown with the U.S. crew and the UK outside of Australia is unlike anything I have developed. Having the Usher Syndrome Society is a great avenue to learn that we are not the same, but we all have one similarity. It showcases very different lives that we live, but we can read and hear the stories and all just say, “Yes.”
Usher syndrome, to me, is a personality. It is something that has shaped my life for what it is, and I love it. I love the people I have met in multiple countries, the experiences I have been on, and the life I am enjoying.
Matt with his friend Asia from the UK who also has Usher syndrome.
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