Epilepsy Canada Influencer: Bailey Murphy
Meet Epilepsy Canada Influencer: Bailey Murphy
“My daughter, Ada, was diagnosed with focal epilepsy in March 2021 when she was only two months old. I hope that through partnership with amazing organizations such as Epilepsy Canada and their Epilepsy Influencer program, more people will come to understand that a diagnosis of epilepsy doesn’t need to be scary. With the right support, every child can grow up knowing that their disability doesn’t limit or define them, and that one day there might be a future where epilepsy is nothing more than a distant memory.”
Ada’s Journey:
No one can prepare you to be a parent. You can do everything exactly right and there still isn’t any guarantee that the child you get will be the child you expected. My daughter, Ada, was diagnosed with focal epilepsy in March 2021 when she was only two months old. She was admitted to BC Children’s Hospital for a week to undergo a battery of testing, which ultimately confirmed her diagnosis. Since then, Ada has tested out more medications, vitamins, and supplements than most adults have in their entire lives. Her latest venture is the medical ketogenic diet, which has worked incredibly well at controlling her seizures for the time being, but there is never a guarantee it will work forever.
The family who left the hospital was not the same as the family who entered it; our entire world changed overnight when we realized that our daughter had a neurological condition that would likely affect not only the rest of her life, but ours as well. When we left Children’s Hospital last year, I felt no hope and no excitement at the prospect of my daughter growing up. Our future felt bleak and empty, because I was simply unaware of what it meant to have a child with epilepsy.
I’ve heard a lot that having a child diagnosed with a medical condition involves a grieving process. You must grieve the life of the child you thought you would have and learn to grow and adapt to the child you got. So yes, Ada has epilepsy. But Ada also has the biggest, most beautiful smile I’ve ever seen. She lights up the world around her simply by existing, and for that reason I wouldn’t change one single cell in her perfect, beautiful brain. She was made this way because she is strong enough to handle it, and as her mother I’m going to spend every day of my life trying to be as brave and as strong as she is. Learning to advocate for my daughter throughout this journey has been the greatest gift she could ever have given me.
Epilepsy is the fourth most common neurological disorder in the world, yet it receives one tenth of the amount in research funding compared to other brain disorders. It can affect anyone with a brain at any time, but there is still so much about this condition that people don't know or understand. My biggest wish is that Ada grows up treated like any other child, and the only way to do that is through education and empowerment. Because of Ada, I’ve learned to be a different mother than I expected I would need to be and instead have become the mother she deserves.
I hope that through partnership with amazing organizations such as Epilepsy Canada and their Epilepsy Influencer program, more people will come to understand that a diagnosis of epilepsy doesn’t need to be scary. With the right support, every child can grow up knowing that their disability doesn’t limit or define them, and that one day there might be a future where epilepsy is nothing more than a distant memory. Ada is the joy of my life, the piece of my heart that exists outside of my body. I hope that one day I make her as proud as she makes me every single day.
The courage of those living with epilepsy,
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