At just two and a half years old, Maverick has already shown a remarkable amount of strength and determination. His journey began in June 2023, when he was born with several concerning symptoms including lethargy, difficulty gaining weight, and breathing challenges.

After months of visits to Vancouver Children’s Hospital and extensive testing, Maverick’s case was eventually sent to a research development group. There, specialists discovered a rare genetic mutation that led to diagnoses of two extremely rare conditions: Nemaline Myopathy and Congenital Myasthenic Syndrome. These conditions affect muscle strength and respiratory function, and in Maverick’s case, there has only been one other documented case combining both conditions.

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A life-changing connection

From a very young age, Maverick has received comprehensive support to help him thrive. His care has included nursing assistance, occupational therapy, chest physiotherapy, specialized positioning support, medications, and the use of a feeding tube to ensure he receives proper nutrition.

When Maverick was five months old, he and his family met Jared, a Motion Mobility & Accessibility Consultant based in Kelowna, at an outreach seating clinic. From that moment on, Jared became an important part of Maverick’s care journey. Jared helped set Maverick up with a stander — a piece of equipment designed to help him safely experience standing. Early on, doctors believed Maverick might never be able to walk, sit independently, or even move his head side to side. But Maverick had other plans.

Day by day, Maverick has continued to prove what determination looks like and today he can move his head from side to side and sit up on his own — milestones that once seemed unlikely.

Now, Jared is helping Maverick transition from a stroller to a wheelchair, marking another exciting move forward in his journey toward greater independence.

A personality that lights up the room

Anyone who meets Maverick quickly notices his magnetic personality. He loves being part of everything happening around him and thrives on communication and interaction. Maverick speaks clearly, is incredibly curious, and enjoys the stimulation of music. He especially loves playing instruments like the guitar and piano.

At the heart of his world is his family. Maverick absolutely adores his two big sisters, Maliya and Maevyn — and the feeling is very mutual. Their bond is filled with love, laughter, and support.

Creating safer access at home with support from Motion

As Maverick grows, so do his mobility and accessibility equipment needs when navigating everyday activities. One major concern for Maverick’s family has been how to most safely transport Maverick in and out of their home. Without proper accessibility equipment, like a vertical platform lift (also known as a wheelchair or porch lift), he would need to be carried, which becomes increasingly difficult as he gets bigger.

After speaking with Maverick’s family and recognizing that funding for the accessibility equipment need wasn’t available, Motion stepped in to help as part of our annual 5 Days of Caring event.

With the help of our partners at Serenity, Motion proudly donated a Serenity Premium Vertical Platform Lift, allowing Maverick to safely enter and exit his home. This lift not only improves accessibility but also ensures long-term safety and independence for his entire family.

Learn more about our entry and exit products!