On August 28th, 2020 Our lives were forever changed.
Our story
On August 28th, 2020 our lives changed forever. What should have been one of the most incredible days of our life quickly spiralled into every parent’s worst nightmare. Our daughter Ayla was born a seemingly healthy little girl, however, shortly after her birth she began having apnea episodes and seizures. She was quickly transferred to the NICU at a larger hospital. 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, were completely unknown. After 10 traumatic days in the NICU 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.
The days and months that followed were harrowing, to say the very least. From severe acid reflux and stiff limbs, to constant crying, an inability to sleep and one missed milestone after another, it became very clear that our beautiful little girl was not developing typically. Every moment of that first year we were filled with an impending sense of dread and paralyzing anxiety.
One year after Ayla was born we were given her diagnosis - spastic quadriplegic cerebral palsy. We spent the next four years trialing every therapy, conducting hundreds of hours of research, and visiting the best paediatric physiotherapists in North America. We travelled to Duke University for stem cell infusions, spent hundreds of hours in a hyperbaric oxygen chamber and traveled to India three times for the experimental Cytotron treatment. Some things helped, others made very little difference.
How AskAyla™ came to be
When we were approached by the technology company Gambit to create what would eventually become AskAyla we definitely had our hesitations. Who are we to give advice to other parents, especially as we are only 5 years into this journey? If you have been parenting a child with a disability for 10, 20 or 30 years then there is very little wisdom we can impart (however I’m sure there is a lot we can learn from you!).
However, what helped us most in the early months and years was meeting and connecting with other parents. There is a camaraderie and kindness in the parent caregiving community that you would be hard pressed to find anywhere else. It was these early connections that became lifelines as we entered this new life. So we sat down with the kind and warm 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.
It is our sincere hope that AskAyla becomes a place for parent’s to turn in their darkest moments. It is an AI companion born of our own lived experiences raising a child with severe disabilities. We hope it provides validation for every emotion that you may be experiencing and provides you with the comfort of knowing that you are not alone on this journey. AskAyla is a lifeline for parents in the early stages of this journey who feel lost, alone & need someone to talk to who has walked this same path.
“One day, you will tell your story of how you overcame what you went through, and it will be someone else’s survival guide.”
—Brene Brown