Lyon was only one month old when his family learned he had an extremely rare chromosomal disorder — Wolf-Hirschhorn syndrome.
Also known as 4p- syndrome, Wolf-Hirschhorn is caused by missing genes on chromosome 4. Children with the condition often experience facial differences, cognitive challenges, and seizures.
For Lyon’s family, the early prognosis was daunting. Doctors warned he might never walk and would face significant developmental challenges affecting every part of his life. That’s when, at just one year old, his family turned to the Glenrose. And everything began to change.
“You don’t know what you need as a parent,” says his mother, Tamara. “The Glenrose educated me on how to motivate Lyon, make therapy fun, and normalize it.”
In his first years, play-based physical therapy helped Lyon develop foundational skills like sitting, rocking, and eventually walking. As he grew, he continued to work on fine motor skills, feeding himself, and learning to communicate.
Speech therapy at the I CAN Centre for Assistive Technology introduced a voice output device, allowing Lyon to express simple phrases despite challenges with traditional speech. Custom braces, ongoing occupational therapy, and supportive group programs were just a few of the services that guided him and his family through every stage of his development.
When Lyon started school, Glenrose therapists remained by his side, ensuring he had the support he needed in the classroom. He was fitted for a motorized wheelchair, later transitioning to a manual one as his mobility improved. And against the odds, Lyon took his first independent steps around age seven. The Glenrose was with him every step of the way. “I always appreciated that the Glenrose celebrated every single milestone,” Tamara recalls. “It was one of the best parts of coming here.”
At fifteen, 
Lyon faced another major setback when he suffered a stroke caused by a hole in his heart. He lost his ability to sit and walk, but after months of intensive inpatient therapy, he gradually regained his strength and communication skills. Later, he attended daily outpatient therapy, including visits to the hospital’s Spasticity Clinic to manage pain and muscle stiffness.
The Glenrose team’s care also extended well beyond the hospital walls. Therapists visited Lyon’s home and even taught his sister ways to play with him. “Having them come into our house to use what we had was truly amazing,” says Tamara. “Our therapists became like friends.”
As he got older, Lyon’s personality blossomed — confident, outgoing, and full of humor. Though he passed away in 2021 at the age of 29, his story continues to inspire.
Reflecting on their journey, Tamara shares:
“The Glenrose is probably the only place where they don’t assume you know what you’re doing. They educate you with respect and really come alongside you to take something overwhelming and equip you with knowledge. They were always encouraging. So many appointments give the worst-case scenario, but at the Glenrose it was always, ‘With the right supports, we’ll be able to get there.’”
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