Arya’s Story
Arya’s story began on July 6, 2020 at 9:23pm, the day she was born. There were so many emotions going into this day, excitement, wonder, fear… but little did we know just how much fear we were about to experience. Three hours after Arya was born she began to have seizures. At the time they started, no one knew that’s what was happening. The nurse had us take a video of the movements Arya was making and we were told that they were going to bring her to the nursery to keep an eye on her and for us to get some rest. Getting any kind of rest wasn’t easy but we managed to fall asleep only to be woken up just two hours later to be told that Arya was having seizures and was going to be transferred to McMaster Children’s Hospital which is almost an hour from where we live. The transport team from McMaster came and spoke with us, telling us what was going to happen next, how to get to the hospital and what to do once we got there. Seeing our daughter in the transport incubator with several different machines attached to her little body was not only heartbreaking but terrifying.
Once we arrived at McMaster and were able to see Arya again, we were informed of all the additional issues that were happening to her. She was also unable to breathe or swallow on her own, so she was hooked up to a machine to help her breathe and a feeding tube inserted to get her the nutrition she needed. A CFM (Cerebral Function Monitor) was also connected to her head to monitor her brain activity as well as the leads for her heart rate, oxygen levels and respiratory rate. Seeing so many wires and tubes attached to our daughter, who was only a few hours old, was truly a traumatic sight, let alone hearing why all this was needed. With all this going on, Covid rules were in full effect which meant only one of us could be with her at a time and the other would just have to wait in the hallways or a roped off sitting area next to the main entrance.
Over the course of the next four months, Arya would go through many tests as the incredible team of doctors and nurses tried to figure out why this was happening to our little girl. Unfortunately, every single test they did, came back negative or inconclusive. Which meant that none of us would ever know the actual cause of why this happened to her.
However, they were able to figure out what was happening to her. Through CFM & EEG monitoring of her brain activity during and between her seizures, they were completely sure that this was Ohtahara Syndrome.
With this diagnosis we were also told that Arya was not going to live to her first birthday. Over the next few weeks we began to see Arya’s condition deteriorate. She could no longer open her eyes, her body could no longer regulate temperature which for her meant she was always running a fever of 38-40 degrees Celsius, she developed a second type of seizure and the seizures were constant.
As her parents we were forced to decide how Arya’s inevitable death was going to happen. We wanted it to be as peaceful and painless as possible so we chose a date and a time to remove her supports and let her go. We had family and friends all over Canada do a balloon release at the exact time she was extabated. Moments later, on November 26, 2020 Arya died with both her mommy and daddy holding her and kissing her.
She is greatly missed by us, her family and so many others, every moment of every day. She'll forever be our sweetest peach, and cutest peanut, and now she flies with butterflies!
On Saturday November 13th 2021, Arya’s family & friends will be walking in her honour.
Arya’s parents, Jessica & Aaron have organized this walk to remember and honour their beautiful baby daughter, but also bring awareness and support other families who are dealing with this terrible diagnosis.
Learn More About A Walk For Arya Here
“We are doing this walk in Arya’s honour to raise money for epilepsy research in hopes of one day finding a cure.”
The courage of those living with epilepsy,
inspires us and fuels our journey.
Your gift will help us to continue on the road toward an epilepsy cure.
