“You’ll never meet somebody who asks more question than Jonah does,” says the eight-year-old’s mother, Sohela, in the patient tone of a parent who has indulged a whole lot of whys in her life. But her voice is also laced with pride for her son’s unquenchable thirst for knowledge.

A Difficult Start

Within hours of his birth, Jonah was rushed to McMaster Children’s Hospital. He had low muscle tone and had been resuscitated five times shortly after his birth.

“It was a really intense 14 days of care at McMaster,” says Sohela, remembering the first two weeks of Jonah’s life in the Neonatal Intensive Care Unit.

During this time, Jonah was diagnosed with congenital myopathic scoliosis and Ulrich congenital muscular dystrophy. This combination of a spinal curvature as well as muscle weakness and contractures affects Jonah’s overall mobility.

Complex Care and Curiosity

Treating and managing these conditions has required a multidisciplinary team at McMaster Children’s Hospital including orthopedic surgeons, neuromuscular specialists, neurologists, physical therapists and developmental specialists.

And Jonah has had a litany of questions for them all. “His inquisitive and insightful nature never fails to entertain his health care workers!” says Kristine Tomczyk, a nurse practitioner who is part of Jonah’s care team. “He asks excellent, direct questions – what does that do? Why are you doing that? Is this going to hurt?”

Life-Changing Surgery

Earlier this year, Jonah underwent spinal fusion surgery. During this 12-hour procedure, Dr. Kishta and the orthopedics team used specialized 3D imaging to guide the implantation of metal rods and screws into the back of Jonah’s spine.

“I just don’t know how he does it. He’s such a tough cookie,” says Sohela, her voice breaking with emotion. “It’s definitely him leading us through it.”

Jonah’s recovery is ongoing, and many more surgeries and treatments lie ahead as he grows and develops. Donor-funded rehabilitation equipment at Ron Joyce Children’s Health Centre, will play a key role in ensuring the best possible outcomes for Jonah.

It’s a long and difficult journey, but Jonah’s parents have learned to take everything day by day and let their son, with his inquisitive spirit and resilient light, guide the way.