2024 marks one year since the world said goodbye to Georgetown native Ryan Lawrence, who lost his battle with complications related to Tourette's syndrome (TS) and undiagnosed cardiomyopathy at 21 years old.
But friends and family have not forgotten him.
The Halton Hills community is keeping his memory alive with the second annual Ryan Lawrence Classic Golf Tournament on Sept. 28, proceeds from which will go towards TS research.
The stated goal of the Ryan Lawrence Foundation, which is organizing the charity tourney, is to make Toronto into the foremost centre of Tourette’s research and treatment.
His father Greg is moving heaven and earth to achieve that goal. Aside from the tournament, he and his board of directors recruited German Neurologist Dr. Christos Ganos to come to Toronto. Greg Lawrence has also enlisted the help of American TikTok influencer Baylen Dupree, who has TS and will be a speaker.
Honouring his son’s memory and supporting Tourette’s research are objectives unto themselves. However, Tourette’s syndrome is one of the most misunderstood neurodivergent disabilities even among medical professionals, creating the push for a sort of education campaign. There is no cure, and the cause is unknown.
“One percent of the population has it, so it’s not huge, but it’s still significant. A lot of family doctors don’t know how to diagnose it or where to send their patients,” Greg Lawrence said. “We just want to bring awareness to it because it is more common than people think and just to help.”
TS can manifest in a number of different ways. If an individual knows one thing about the disability, it's that the patient will have uncontrollable verbal tics. An especially noteworthy version of the symptom is called coprolalia, where the individual has an insatiable and sudden need to make vulgar comments.
A similar and accompanying symptom is called echolalia, where the sufferer mimics what others say and do. Several motor tics can come with the condition like the inability to prevent odd or crude hand gestures or something as extreme as breaking objects against a wall.
To the outsider, these symptoms often appear socially unacceptable. Isolation from peers and authorities soon follows. They cannot help but get in trouble at school, become subject to ridicule and have trouble finding employment. Depression and other mental disorders soon follow.
Things took a turn for the worse for Ryan during the pandemic. Stress can greatly exacerbate tics and Ryan was no exception, with his condition worsening during lockdown.
He would often poke his fingers into his eyelids, requiring corneal transplants to repair his eyes. He pulled on his lips and shook his head so hard, he gave himself a concussion.
“They don’t want to be out in public. They don’t want people to see them,” Lawrence said. “When Ryan was poking his eyes, he used to wear safety glasses and he put tape around it so that he couldn't put his fingers in them.”
Amanda Matejicek’s 11-year-old son Schylar has Tourette’s syndrome as well and his condition can be a window into what it's like for young kids to go through it in places like school. A teacher’s ability to adapt to this type of neurodivergence, she finds, “has been varied.”
“Teachers are people too. We have had some really amazing teachers who work hard to understand and who have met Schylar where he is and have done a great job accommodating,” Matejicek told HaltonHillsToday.
“We actually found a lot of challenge with some of the more senior, tenured teachers who’ve felt that this is just behavioural,” she explained further. “I remember sitting there educating his grade one teacher and them saying, ‘It feels like he's just doing this on purpose and he's lying that he can't control it.’”
But patients can beat the odds and live long and happy lives with the condition, especially if they have strong support networks. Ryan Lawrence had a fairly large friend group at Christ the King Catholic Secondary School (CtK) and his father remembers him being “a bit of a joker.”
The Ryan Lawrence Foundation has started an annual $1,000 scholarship for CtK graduates who have faced adversity in high school.
A few weeks after his son’s death, Greg was watching the Tom Hanks film A Man Called Otto. Noting some similarities with Ryan’s life, he wrote to the actor, to which he received a reply.
“We are all such, gossamer beings, each loaded with so much mystery that sometimes overcomes the miracle of being alive,” a section of Hanks’ letter reads.
“No one is a stranger once their story is shared, no one is alone when they are listened to,” Hanks said in concluding his letter to Greg.
A memorial bench has been installed at CtK in Ryan’s honour. A plaque with some quotes from the letter will soon follow.
The tournament will take place at Granite Ridge Golf Club Sept. 28 starting at noon.
Details about the gathering can be found on RyanLawrenceFoundation.com.
