Tyler is 7 years old
Due to a lack of awareness on neuromuscular conditions in the medical community, Tyler O’Connor’s diagnosis process was challenging. Tyler’s mum, Amanda, had to continually push to form a diagnosis, as the doctors didn’t have enough knowledge of neuromuscular conditions to recognise the symptoms correctly.
When Tyler was about two and half years old, he became very ill with a viral infection, which affected his mobility. The doctors explained that Tyler’s difficulty walking was simply slow development, because he was only two and a half. But Amanda felt that there was something the doctors were missing, especially seeing her nephew, who was 13 months younger already demonstrating greater mobility. Concerned, Amanda continued to push the doctors to investigate.
“I knew something was wrong,” says Amanda. “When the pediatrician said that they were testing for Muscular Dystrophy, all I knew was that this would mean a wheelchair for Tyler, but I didn’t know anything else about the condition. The diagnosis was so slow due to the lack of awareness around Muscular Dystrophy, even in the medical community.”
It was not until 12 months after the initial visit that they received the diagnosis of Duchenne Muscular Dystrophy. Tyler went into hospital after his diagnosis and it was there that the family was connected to Muscular Dystrophy South Australia. “At first, we joined MDSA for information about Tyler’s condition, but since then it has come to be about social inclusion for Tyler,” says Amanda.
“Since the diagnosis, we’ve been to shows, camps, and all manner of events. It’s so valuable for Tyler, and it’s really great for him to feel so included. Tyler goes to a mainstream school so it’s hard for the school to be truly inclusive; what the school thinks of as inclusivity is different to how those in the MDSA community think about inclusivity. “Seeing others in wheelchairs through MDSA gives Tyler a sense of belonging. For him to be around kids going through something similar is extremely valuable, and it’s good for us to be able to talk to other families who relate to our situation.
“From the beginning, MDSA has helped us understand how we can put things in place for Tyler. They gave us funding to attend a conference where we were able to learn more, met other families and hear new stories.
MDSA provides vital support networks, and a community that is genuinely inclusive, to benefit families like ours.”