Tyler is one of 24,000 kids in Canada living in pain due to juvenile arthritis. For his efforts to raise funds and awareness, he was named one of two National Youth Leaders by Cassie and Friends in 2021.
In February 2020, Tyler Mah, then 11 years old, suddenly couldn’t sleep at night because of excruciating pain in his hip. The cause turned out to be a rare form of juvenile arthritis (JA) called chronic recurrent multifocal osteomyelitis (CRMO). JA affects approximately 24,000 kids in Canada; CRMO is one in a million.
“I worried I wouldn’t be able to play sports,” says Tyler, who after a challenging year of tests and medications was still in pain. In March 2021, a full-body MRI at the Hospital for Sick Children showed lesions in the ligaments and joints that connect his bones, resulting in another diagnosis: enthesitis-related arthritis. Tyler now receives infusions of Remicade, a drug that allows him to play basketball and volleyball again.
To make sense of his experience, Tyler created a website for a school project to share his journey with pain and medications and to raise awareness. He also fundraised and joined the Toronto run/walk organized by Cassie and Friends, a national charity working to advance JA research and care so kids like Tyler can have the pain-free futures they deserve.
“We felt so alone and terrified at the beginning, and worried about the future,” says Tyler’s mom, Cindy. “We’re so thankful for Cassie and Friends because they’re doing so much for families like ours by sharing information and personal experiences, hosting educational webinars, connecting families across Canada, and working toward a cure.”
“I hope no other kid has to go through what I did,” says Tyler. “My advice to others is to stay strong, keep your joints moving, and don’t be afraid to tell others about your experience.”