23 May Remembering Tyler James Osmond
Tyler James Osmond, aged 9 years, sadly passed away suddenly from an arteriovenous malformation (AVM) in 2021. Like so many people, his family hadn’t heard of an AVM before his tragic loss.
Brain diseases, disorders and injuries can strike any person, at any time. While research has helped improve diagnoses, treatments, and patient outcomes, many conditions can still strike unexpectedly and cause devastating impacts on patients and their families.
Tyler’s cousin, Sarah O’Donald, and his grandmother, Cathy Hunt, spoke to us about Tyler and their commitment to raising awareness and research funds for AVM.
What is arteriovenous malformation?
Arteriovenous malformation (AVM) is a rare cerebrovascular disorder in which a tangle of blood vessels irregularly connects arteries and veins. This disrupts blood flow and oxygen circulation, so surrounding tissue might not get enough oxygen. Also, because these blood vessels do not form properly, they can weaken and rupture, causing a stroke.
AVMs usually form before or just after birth. Symptoms vary depending on the location of an AVM, but many people do not have any initial symptoms. They only have symptoms when bleeding in the brain occurs, which was the case for Tyler.
“There were absolutely no signs or symptoms at all that Tyler had an AVM,” says his grandmother, Cathy.
“The sudden loss of our most beautiful Tyler was, and still is, completely devastating, shocking and heart wrenching for his entire family. The coroner finally reported that the neurologist had discovered an AVM in his cerebellum. Tyler was an extremely intelligent boy, he adored drawing and art, and he had a loving and sincere presence that touched everyone around him.”
Sadly, when people pass away due to an AVM, they are often only discovered in the autopsy. Tyler’s story is just one example of the impact of this disorder, and the need for improved diagnoses and treatment.
BF: Sarah, can you please tell us about yourself & your relationship with Tyler?
SO: My name is Sarah and I am a cousin of Tyler’s. I am from Adelaide but I have been living in Scotland for 6 years. I used to return to South Australia every year when I could. I last saw Tyler when I visited over December 2019 – the start of Feb 2020.
I remember playing “Luigi’s Mansion” with him as that was the game he was currently obsessed with. He loved talking about everything Nintendo and Pokemon. It was so nice to see the pure joy he had for his favourite games. We also used to draw together. He was so good at drawing and we would draw all of his favourite characters. He was a very bright child. Always so polite, kind, confident and positive.
BF: How did you cope with losing Tyler?
SO: Losing Tyler in 2021 was such a difficult time for everyone. The suddenness of it all was shocking and it was hard to comprehend. Personally for me, being so far from home, I struggled immensely with the grief. Of course due to Covid, I couldn’t just travel back to Australia easily without having to quarantine and spend an unrealistic amount of money to be with my family. All I wanted was to be home and with my family to grieve with them and to help support them.
BF: You recently hosted a fundraiser in Tyler’s memory – could you please tell us a bit about that?
SO: I decided to host the fundraiser to help in my own way by contributing to the fantastic research you do at the Brain Foundation. My aunty Cathy reached out to me to paint one of Tyler’s Pokemon cards. I felt honoured to do so and thought that it would be a great idea to host a charity stream after she told me about The Brain Foundation and how she donates to your cause every year on Tyler’s birthday and at Christmas time. I like to hold at least one charity stream a year on my Twitch channel. It’s nice to be able to use my platform to help others.
BF: Is there anything else you would like to share about your experience?
SO: As far as I’ve been told, Tyler never showed any signs of having an AVM. It was confusing to have the phone call from my Mother breaking the news to me. I, like everyone in my family, didn’t understand how or why he had passed. The months of confusion and uncertainty went by as my family started getting the reports from the coroner back. I hadn’t even heard of an AVM at the time and it was shocking to learn that it was there and that he never seemed to show any signs of ailment.
It just really shows that we really never know how long we have left and that we just have to live each day as best we can. Reach out to your loved ones, be there for them and cherish every moment you have left with them.
Thank you Sarah and Cathy for speaking to us about Tyler, and for all your efforts in raising awareness and research funds. If you would like to view Sarah’s Twitch stream or learn more about AVM, you can see more here: