Marylee’s Story
Meet our daughter, Marylee. She is currently 7 years old and was diagnosed with epilepsy when she was 3 years old.
She had her first seizure in the car while we were driving back home from work. She was taken to our local hospital for the night. She started taking medication for epilepsy a couple of weeks later but was referred to Sainte-Justine Hospital’s neurology department, a children’s hospital in Montreal.
We were treated so well by all the hospital employees that we interacted with; they were so nice, helpful, and reassuring. Although we were extremely anxious about Mary’s condition, they were always there to answer our many questions and to adjust Mary’s medication.
As gamers ourselves, we often saw the epilepsy warning at the beginning of some games and wondered why she never really reacted to flashing lights and loud noises. We were told that those are only some of the potential triggers for seizures. Things we learned with her diagnosis were to recognize HER triggers, namely fatigue. We check on her regularly while she sleeps, and we make sure she always takes the time to rest if she feels down.
We are determined to not let Mary’s condition rule her life. Before COVID hit, she was taking ballet lessons during the school year and soccer in the summer. She took swimming lessons as well. Now, she wants to play drums and practice figure skating. She loves cooking and baking, and she is a great artist!
It is still unsure if Mary’s severe speech impediments are related to her epilepsy but she has had the support of so many professionals, from speech therapists to specialists at her school. Even the neurology team is supporting us with this.
Now, in 2021, Mary has changed medication because her neurologist wants to stop her seizures completely. The thing about epilepsy is that it is always a risk and there is no simple solution. After over a year without seizures, she seized again in November 2020. As it turns out, the medication she was on made it harder to detect seizures because she still had a lot of epileptic activity in her brain but it didn’t trigger seizures. We continue to look for the right medication and dosage to treat her properly.
Here's hoping to new research making it easier for her to live her life to the fullest.
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.