Doctors thought he might have a fatal form of muscular dystrophy.

“The anxiety of waiting to find out if your son is going to die – and not being able to do anything about it – was huge,” says Max’s mother Katharine.

After two-and-a-half years of tests, “they threw up their hands and said ‘we can’t figure out what’s wrong. He’s a mystery.’ ”

Having a child with a disability but no diagnosis can be terrifying and isolating. While Katharine was happy her son had escaped a more serious prognosis and was making progress she remembers “a period of despair. You don’t have a group of medical professionals or parents to reach out to who know your child’s condition and can provide a clear path of what to do and what to expect. You’re forced to travel in the present and what the future brings is a big unknown.”

“For so long we were in the dark about things that could help him: that he could have ankle and foot orthotics that would allow him to stand, or that there was a nursery school program for children with disabilities. I had him in regular daycare and had to coach the staff on how to handle him.”

At age two, Max was accepted into Bloorview’s neuromuscular program, and “that was good for us. Even though we were an oddity and didn’t fit, we at least had someone to follow Max.”

Max attended Bloorview’s integrated kindergarten program, which gave him access to physiotherapy and other services for three years. Katharine felt supported by mothers of other students in the school, and Max identified strongly with fellow students who had cerebral palsy and similar physical issues.

However, once Max left the school, Katharine had trouble accessing services that would have kept him with his former classmates. “Many programs are targeted to children with common diagnoses, like cerebral palsy,” Katharine says. “It’s hard when your child doesn’t fit the criteria.”

It’s not easy to parent a child who doesn’t have a label “but you get used to it,” Katharine says. “You have to satisfy yourself that you’re going to chart your own course, and you have to find people who are flexible.

At some point you have to say enough is enough when it comes to searching for a diagnosis. If your child is making some progress, it’s okay to stop.”