Our 2023 MacKids Walk & Wheel Patient Ambassadors are sharing their stories about the remarkable care they received at McMaster Children’s Hospital, including Ron Joyce Children’s Health Centre. We hope these stories inspire you to register and fundraise!
Shortly before Ida’s fourth birthday he fainted at school. A few days later, it happened again.
Understandably concerned, his mother Rute rushed Ida to a walk-in-clinic where the doctor said he suspected Ida was having seizures and directed Rute to take her son to McMaster Children’s Hospital immediately. A week of tests and observations in the hospital led to a diagnosis of epilepsy and a prescription for medication.
The medication helped with Ida’s epilepsy, but did nothing for the significant and worrying changes in his behaviour that emerged around the same time as his seizures. Almost overnight, Ida wasn’t sleeping or eating well, he was acting up at school and seemed to be losing any interest in learning.
“Before, he was able to tell you about letters from A to Z… But all of a sudden he just lost interest and he couldn’t write his name,” remembers Rute. “He couldn't even pronounce some names that were easy for him to pronounce. It was like he was going backwards.”
Ida was referred to McMaster Children’s Hospital’s Ron Joyce Children’s Health Centre for assessment and in April 2021, was diagnosed with Autism Spectrum Disorder (ASD) and ADHD.
“When you get the diagnosis you’re like, where do I start? what am I going to do?” says Rute, remembering the million questions, worries and uncertainties that flooded her mind, drowning out all other thoughts.
Fortunately, in addition to being a regional ASD diagnostic hub (one of only five in Ontario), Ron Joyce Children’s Health Centre also has an established Autism Program that provides supports and services for autistic children and their caregivers.
Rute worked with behaviour therapists and other developmental specialists at Ron Joyce Children’s Health Centre to find strategies she could use to work with Ida’s unique traits in order to build his skills, nurture his talents and positively manage his more challenging behaviours.
With the guidance of teams at Ron Joyce Children’s Health Centre, Rute found ways to minimize Ida’s public meltdowns, connect him with other kids and re-engage him in learning.
Today, Ida is thriving. He enthusiastically helps his mother select bread at the supermarket, sits with other children at lunch, and, given half a chance, will chatter on about the planets in our solar system – their names, colours and sizes – or whatever new topic has piqued his curiosity.
“He observes things and the knowledge you will get from his observation is amazing,” Rute says with joy and pride. “He’s a sweet boy, he's just a blessing.”
You can join Ida at this year’s MacKids Walk & Wheel on June 3! Support life-changing care for kids like him and our other Patient Ambassadors by registering, fundraising and donating today.
“You’ll never meet somebody who asks more questions than Jonah does,” says the eight-year-old boy’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. “He’s a very curious person,” she adds.
Within hours of his birth at St. Joseph’s Hospital, 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 [Children’s Hospital],” 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 ability to move, stand and sit, and participate in many physical activities.
Treating and managing these conditions has required a multidisciplinary team at McMaster Children’s Hospital that involves 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 healthcare 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 gonna hurt?”
Earlier this year, Jonah underwent halo-gravity traction to gently ease the curvature of his spine in preparation for spinal fusion surgery. In March, during a 12-hour procedure, Dr. Kishta and the orthopedics team performed this surgery using specialized 3D imaging to guide the implantation of metal rods and screws into the back of Jonah’s spine.
“We’ve met very special people through McMaster,” says Sohela. “Dr. Kishta has been like a superhero. He’s taken us through this one baby step at a time. He knows how intense it is and he gave us a lot of time to process everything.”
Jonah’s recovery is ongoing, and many more surgeries and treatments lie ahead as he grows and develops. It’s a long and difficult journey, but Jonah’s parents have learned to take everything day by day and let their son, his inquisitive spirit and resilient light, guide the way.
“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 on – him leading us through it.”
Eva’s health care journey started before she was even born, when an ultrasound revealed that mom had low amniotic fluid, also called oligohydramnios. During Eva’s newborn examination it was discovered one of her tiny hips was dislocated. When she was six months old, Eva had surgery to try to fix her hip and enrolled in a course of physiotherapy shortly thereafter. Little did her parents, Angie and Adam know, this was only the beginning of their daughter’s story with Hamilton Health Sciences.
“We were going for physio and not really thinking much of anything,” remembers Angie. “Then physio led to needing [occupational therapy] and then needing speech therapy. One thing led to the next and it started dawning on us that maybe our kid is more different than we thought.”
During routine pediatric appointments it was noted that Eva had a variety of developmental delays. Eva was referred to a developmental pediatrician from the team at Ron Joyce Children’s Health Centre who observed and identified global dyspraxia, a condition that affects the motor skills involved in things like walking and talking. Eva’s therapists and doctors also noted that she showed many signs of cerebral palsy, sensory processing disorder and autism, though none of these diagnoses could independently explain Eva’s unique development.
“That was really hard as a parent: learning that your kid has all these issues. I felt really lost, so all the services at Ron Joyce [Children’s Health Centre] were an important guide,” remembers Angie. “Especially the Infant-Parent Program, which helped me gain much needed confidence.”
Speech, occupational, recreational, and behavioural therapists, as well as the Technology Access Clinic, helped support Eva’s developmental needs. Social work services also made a huge impact for Angie and Adam, supporting both mental health needs and paperwork navigation. Meeting other families at Ron Joyce Children’s Health Centre who truly understand the unique trials and triumphs of raising a child with disabilities helped give Angie and Adam a welcome sense of community.
“It’s healing being in a place where people understand us and we don’t feel like we’re different because we’re in a building that’s full of different people,” says Angie. “It makes our village feel that much bigger. We don’t feel as alone. I think that’s the biggest thing.”
While Angie and Adam were initially eager for a definitive diagnosis for Eva, they’re now much more comfortable accepting uncertainty and taking things day by day.
For her part, Angie has settled on ‘neurodivergent’ as the best all-encompassing term to describe her daughter’s many unique traits. She acknowledges that there will always be new challenges (and joys!) in raising Eva, but, thanks in part to the health care and community support she has received through the Ron Joyce Children’s Health Centre, she feels empowered to meet these challenges knowing there’s a whole community ready to journey alongside them.
You can walk and wheel alongside Eva and support her outstanding community by signing up for MacKids Walk & Wheel, fundraising on your own or as part of a team, or donating to support the amazing care at McMaster Children’s Hospital, including Ron Joyce Children’s Health Centre.