Home is where the care is: National Epilepsy Awareness Month 

On a gloomy winter morning in Winnipeg, with clouds hanging low and snow clinging stubbornly to the ground, Vince and Michelle brought their two-and-a-half-month-old daughter, Ayla, to The Children’s Hospital of Winnipeg emergency department. They arrived at 9 a.m., but by the time they returned home at 4 p.m., their lives had changed forever. 

Michelle observed that Ayla was having unusual, repetitive body movements. At first, Michelle wondered if these clustered small spasms were simply the newborn startle reflex. Days later, Vince noticed the same movements, and together they searched online looking for answers. They immediately found articles on and videos of infantile spasms that looked exactly like what they were seeing. Over the next few days, they took videos of Ayla’s twitching, which were sporadic and unpredictable. Trusting their instincts and with evidence in hand, they went straight to the hospital. Within the hour, a paediatric neurologist saw the videos and observed Ayla’s spasms in real time. Testing began immediately, infantile spasms were strongly suspected and treatment began that same week. 

Ayla’s epilepsy journey has been anything but straightforward. Over time, she was diagnosed with drug-resistant epilepsy, requiring multiple medication trials. Today, she takes three medications and additional supplements to help manage both large seizures and smaller spasms, which is a delicate balance achieved only through persistence, advocacy and constant reassessment. As Ayla grew, further diagnoses followed, including global developmental delay and cortical visual impairment. Developmentally, she remains at an early infancy level. She does not sit independently, crawl or stand, and feeding requires full support. Despite consistent therapy, her brain struggles to retain what her body practices – a reality many families living with neurological conditions know all too well. 

At the time of Ayla’s diagnosis, her parents were just beginning to find their footing as new parents. Vince, a meticulous planner, signed them up to take every baby class available. They were attending webinars and in-person classes every other weekend. The pregnancy had been normal with no indication that medical challenges lay ahead. They learned that no amount of preparation can ready you for life’s curveballs. Learning how to administer seizure medication to a tiny infant, often by syringe, while navigating sleep deprivation, fear and uncertainty was overwhelming. Emotionally, it marked the beginning of life as “medical parents,” a role they never anticipated.  

Michelle carried a heavy sense of guilt, questioning whether she could have done something differently during pregnancy or delivery, an inevitable but impossible question to answer. Over time, they learned that two things can be true at once: deep gratitude for their daughter, Ayla, and grief for the motherhood and parenthood they once imagined. Both feelings are valid, but sitting with the latter for too long would dim the former.  

After more than a year of treatment and therapy in Winnipeg, Ayla’s medical team felt they had exhausted all local options. Conversations turned to advanced epilepsy care, including possible surgical interventions and the need for broader, specialized supports. With encouragement from family and a strong partnership with their Winnipeg-based care team, the decision was made to pursue care in Ontario. Leaving behind a settled life with established careers, family and home was not easy, but advocating for Ayla meant doing what was best for her future. Ontario offered expanded epilepsy expertise, specialized paediatric care and access to a wider network of supports. Thankfully, Vince’s parents had relocated to Ajax, Ontario, 15 years ago, and welcomed their family and 16-year-old dog, Mikka, into their home during this transitional period in the summer of 2025. 

One sunny day, while driving in Ajax, Ayla’s mom noticed a large, colourful building and asked herself, “What is that place?” That building was Grandview Kids. She searched the internet, and after learning more, told Vince, “Ayla needs to be here.” The family self-referred, and soon after, Ayla qualified to begin receiving services. 

From the moment they walked through the doors, they felt welcomed. The inclusive environment, the warmth of the space and the family-centred approach made an immediate impression. For a family new to Ontario and still feeling like “new parents,” Grandview Kids offered something deeply meaningful: a sense of belonging. 

Today, Ayla is 2 years old and receives physiotherapy, occupational therapy and speech-language pathology services, along with feeding clinic support at Grandview Kids. As they wait for a developmental paediatrician and equipment funding, they are assured by therapists that they are on the right track. Each appointment feels like a step forward, not just in care, but in confidence. Just as importantly, the family is beginning to connect with other Grandview Kids families who truly understand the realities of epilepsy and complex medical needs. 

When Michelle thinks about Ayla’s future, she feels a mix of emotions, like hope, fear, excitement and uncertainty. Will Ayla walk? What will school look like? How independent will she be? As she reflects, one thought stands out. “When you’re a parent, you prepare your child to not need you someday, but you’re never prepared for the possibility that they might need you for the rest of their life.” And yet, there is hope. Seizures are better managed, supports are in place and Ayla is surrounded by a team and a community that sees her potential. 

During National Epilepsy Awareness Month, Ayla’s family wants other parents and caregivers to know that they need to trust their instincts, ask questions, follow up and push for answers and supports, even in the face of pushback or doubt. You are your child’s strongest advocate.  

They also encourage families to meet their child where they are at. Inchstones and milestones look different for every child, especially for those with physical, communication and developmental needs. “If you find yourself comparing your journey to others, always remember to find the glimmers among what can feel like so many triggers.” Epilepsy is not a straight path, as treatment takes time and decisions are complex.  

With the right supports, compassionate care and a community like Grandview Kids, families do not have to walk this journey alone.