How I Found Hope After My Daughter's Diagnosis

THE FULL STORY

We all have them—those days and moments that determine the trajectory of our lives. On August 28, 2020, my life changed forever. On a beautiful late-summer afternoon, what should have been one of the most incredible days of my life quickly spiraled into every parent’s worst nightmare. My daughter, Ayla, was born seemingly healthy after a completely normal, uneventful pregnancy. In the brief glimpse I had of her after my C-section, I saw a fuzz of blonde hair and beautiful blue eyes. But then, minutes after her birth, Ayla stopped breathing and began having apnea episodes, which we would later find out were seizures. She was resuscitated and intubated, then quickly transferred to the NICU at a larger hospital. We had no idea what was happening, and when—or if—we would ever hold our baby girl. My husband, David, and I felt as though the life we had planned was vanishing before our very eyes.

When Everything Changed

After days of tests and many unanswered questions, we were told that our daughter suffered a severe brain injury of unknown cause. Her future, and ours, was completely unknown. She might be in the NICU for 3 weeks or for 3 months. Over the course of the next few weeks, the NICU nurses (who are some of the most incredible individuals you will ever meet) taught us how to gently hold her without pulling on tubes and wires. When they removed her tracheal tube and PICC line, they taught me how to change her diaper. And when her NG tube was removed, they showed me how to feed her a bottle with my pumped breast milk.

When we were discharged from the NICU 10 days after Ayla was born, we were told that our daughter would be at risk for cerebral palsy and developmental delays, but that only time would reveal the full extent of her injury. This led to an impending sense of dread, as well as severe anxiety and depression. The days and months that followed were harrowing, to say the least. For Ayla, it was marked by severe acid reflux, stiff limbs, constant crying, an inability to sleep and one missed milestone after another. It was very clear that our beautiful little girl was not developing typically. For me, when I was awake, I felt as though I was living in a nightmare, and when I did sleep, I would see her crawling and smiling in my dreams—only to wake up with tears streaming down my face as reality sunk in. My little girl was in pain and trapped in a body that she could not move, and there was nothing I could do. Eventually I spoke to a psychotherapist, and though she was kind and compassionate, I couldn’t get this one thought out of my head: “You have no idea what I am going through. You don’t know what it’s like to walk this path.”

A Diagnosis and a Thousand Unknowns

One year after Ayla was born, we were given her diagnosis: spastic quadriplegic cerebral palsy. She would never walk and likely never speak. My husband and I both knew that it was coming, and somehow it almost came as a relief. For a year we had been living in limbo, hoping that our daughter would be fine but knowing deep down that the future was not going to be easy. Initially, I looked for hope in treatments and therapies. Always an avid researcher, I read every book I could find on cerebral palsy, researched different physiotherapy modalities and contacted every neuroscientist I could find  who was conducting research on brain repair. We spent hundreds of hours in a hyperbaric oxygen chamber and thousands of dollars on physiotherapy intensives all over North America. At age two, Ayla even received a stem cell infusion at Duke University from her little sister’s cord blood. Some things helped, others made very little difference. Yet every time I discovered a new therapy, I hoped that this would be it, this would be the thing to help Ayla and make a difference in her life.

Finding My Community Halfway Around the World

In July 2024, we were invited to travel to Bangalore, India, where Ayla received an experimental non-invasive treatment intended to stimulate brain repair. Like many things in India, the clinic was a dichotomy, a merging of old and new. As we walked through the regal gates and into the grounds, it almost felt as though we were walking back in time to Imperial India. A gaggle of geese roamed the grounds and lush foliage draped across the red brick buildings. There was a calm, almost meditative atmosphere at the clinic. And to my complete and utter surprise—here in the heart of India—I found a camaraderie with other parents that was unlike anything I had ever known. We were parents who had been through tragedy, grief and indescribable pain, and we had all tried everything and traveled around the world to help our children. Perhaps it was because Ayla was born during COVID, or maybe it’s the tendency toward privacy at the children’s treatment centres in Canada, or maybe it’s just because we live in a very rural area, but it was one of my first experiences of being surrounded by parents who were all on the same journey.

I met parents from all over the world—South Africa, Spain, United States, Mexico. I met a mother who had traveled from the foothills of the Himalayas with her child with severe cerebral palsy. All of us were caregivers for children with a life-altering diagnosis. We swapped our own version of war stories —our experiences with experimental stem cell therapies, new physiotherapy modalities, nootropics, brain regenerative therapies. And while we were the unlucky ones, bound by grief and tragedy, in this little biomedical clinic in the middle of India, I think we all felt hope and acceptance.

I quickly became friends with a kind Malaysian pediatrician who had traveled to India for treatment for her daughter who had severe autism. We instantly connected and started chatting, and I told her about some of my negative experiences with the medical system in Canada. I described how in the early days of Ayla’s life, her neurologist would quickly and coldly dismiss any treatment or medical intervention I asked about, saying bluntly, “Your daughter’s injury is too severe, and I don’t want to give you false hope.” I explained to her how, in those moments, the neurologist's words were like daggers, killing all hope I had for my daughter’s life.

She listened to me intently, taking in what I said both as a mother and as a doctor. The next day, when I saw her at the clinic, she excitedly came over to me and said to me in her soft Malaysian voice, “I thought about what you said all day yesterday, thinking about what I could have said. And then I realized it: We are the hope. We have to be the hope for our children.” I thought about this for weeks and months afterward. Almost every medical professional I had met on my daughter’s journey had taken away any hope I had for my daughter—not out of malice, I know that they were just trying to be realistic, but when your child is ill or disabled, and there is no known cure, the greatest gift you can give a parent is that of hope. And it’s not even hope that your child’s condition will be cured, but instead it’s the hope that you and your child will one day be happy.

Turning Hope Into a Lifeline 

A little over four years after our daughter’s diagnosis, a chance encounter led us to meet the founders of Gambit, an innovative Canadian AI company. Gambit is a bit of a paradox—an AI company inspired by a human experience. Gambit was founded when its CEO, Patrick Belliveau, met Ellen Wynters-Robinson, a breast cancer survivor. Together, they created an AI companion for women undergoing breast cancer treatment, called AskEllyn. AskEllyn is the world’s first AI companion for breast cancer. It’s forever free, available 24/7 and currently being used by breast cancer patients all over the world. Ellyn thought that there should be something similar for parents on the disability parenting journey.

She arranged a meeting with my family and the wonderful people behind Gambit. Naturally, my husband and I had our reservations. Who are we to advise other parents, especially when we were only five years into this journey? If you have been parenting a child with a disability for 10, 20 or 30 years, there is very little wisdom I can impart (though I’m sure there is a lot I can learn from you). But all Gambit was asking of my husband and me was our time and our story. So we said yes. As I learned in India, there is a solidarity and kindness in the parent caregiving community that you would be hard pressed to find anywhere else, and we felt that if this could help even just one other parent, it was worth the time and effort. I also knew that it can take a long time before a parent raising a child with a disability is in a mental state to make connections with other parents. For me, it was years. And for many of us, our child does not receive a formal diagnosis until they are at least a year old. Maybe this could help bridge that gap.

 With all of this in mind, we agreed to sit down with the wonderful founders of Gambit for multiple interviews, reliving the early days of Ayla’s life and the emotions, ranging from severe anxiety, depression, and grief in the early days to the slow emergence of gratitude and hope as the years passed. We talked for hours and hours about what it’s like to raise a child with a disability, how you feel alienated and alone, angry and misunderstood by family and friends, forgotten and overlooked by society. We tried to explain that the grief comes in waves; some days you may feel like you can weather the storm and other days you will feel like you are drowning.

Making the Journey Easier for Others

I also knew that I wanted to relay to other parents on this journey the one piece of wisdom that changed my life and my view of raising a child with a disability. One day, when I was researching cerebral palsy, I came across a statistic that made my stomach drop. I learned that, based on my daughter’s type and severity of cerebral palsy, there was only a 40 percent chance she would live to the age of 20, and that the life expectancy number would continue to decrease as she aged. It was in that moment that I realized I had two choices: I could either choose to be mad that my beautiful daughter sustained a severe brain injury and wallow in that sadness and anger, or I could choose to be grateful that she survived such trauma and savour every moment with her. And from that day forward, while it can be incredibly hard, I try my best to choose the latter.

After our interview, Gambit worked their magic. A few months later, they sent us the first prototype of AskAyla, the world’s first AI companion for parents on the disability parenting journey. After extensive testing and a few tweaks, we launched it to the public in May 2026. AskAyla is born of our own lived experiences raising a child with severe disabilities. It is non-medical by design and always free to the families who need it. It is there to answer questions, sympathize, listen and provide guidance. It’s meant to be a lifeline to parents entering this incredibly hard journey. But my most sincere hope for AskAyla is that perhaps it can be a virtual manifestation of what the clinic in India was for me: a safe space to easily connect with another parent who has walked this same path and survived. A place where you can vent your frustrations with life and the medical system without being judged. Where you can be open about the fears that you can’t talk about with other mothers or even your partner but that wake you up every night at 2 a.m, that your child will be dependent on you for the rest of your life, that you will never experience happiness again, that other children will make fun of your child, or the hardest one, that you may one day outlive your child. AskAyla is about hope—that rarest and most elusive of emotions when you are raising a child with a disability. Hope that even though life has dealt you one of the hardest hands, you can still live a beautiful life.

A Different Kind of Hope

One of my greatest hopes is still that, within Ayla’s lifetime, there will be a medical breakthrough and we will know how to repair the brain after injury. However, as the years have passed, my hope has also transformed. I know that for the remainder of my life, I will carry the grief about what happened to Ayla. I will always wonder what she would say if she could speak, who she would have become had she not sustained a severe brain injury. But I also love and appreciate who my daughter is today, and I have hope that she will lead a beautiful and meaningful life.

As parents of disabled children, we are individuals bound not only by hardship and grief, but also by our hope for our children. Or, as my friend in India would say, We have to be the hope for our children. Along with AskAyla, we also founded a retreat called Camp Moonlight at our resort, Whispering Springs, in Northumberland County, Ont. Every year, for two days, we close our doors to the public and invite families from all over the country who are raising children with disabilities. This is an event not only for the child with the disability, but also for the siblings and parents. It’s a place to come together, make memories and connect with others on the same journey. It’s a space to hold hope. Because I know that the greatest source of hope on my journey has been the mothers who came before me, and I hope I can make this path a little easier for the mothers who come after.