Emilia’s Story
Emilia was born in August of 2018, just 3 weeks after her birth her father and I noticed that when she would sleep her eyes would open and close but be rolled back and her head would lift up. At first, we did not think anything of it but when it started to happen more and more, we decided to bring her down to Sick Kids Hospital in Toronto and have them look at her. Upon arrival I took Emilia to the triage nurse, once I explained what was happening the nurse just said “those are seizures”. Within that moment it felt as if my stomach was in my throat. It was the scariest moment within mine and my husband's life. Emilia was diagnosed with Focal Seizures.
Having a diagnosis was not just hard for my husband, our son and I, it was extremely hard for some of our other family members as well. Everyone had so many questions and concerns. The team at Sick Kids was amazing with Emilia, every nurse and doctor showed so much support and care especially because we were so new to what epilepsy was. Any questions we had her team was very helpful and if they did not know they went above and beyond to find us the answers. Within the first year of her life Emilia was on Phenobarbital, this helped control her seizures.
When Emilia turned 18 months old, we no longer saw her seizures happen as much as they used to, so the doctors at Sick Kids decided to remove the medication. But sadly, the seizures did not stop for long. The doctors wanted to wait for an MRI to decide what the next steps would be and what type of medication would be best. Because of COVID-19 MRIs were extremely backlogged but we got lucky enough that by the time Emilia was 2 we had her appointment. When we got the results, they found a ‘birthmark’ on her occipital lobe. They decided it was best for her to continue on with medication. To hear that your child will be on medication for the rest of their life was very hard. But the medication has been a game changer for Emilia. Emilia started Keppra a year ago and it has really controlled her seizures. Because of it Emilia has been seizure free for 5 months now.
Looking at life today Emilia has excelled so much, she started JK this year and is thriving. She also started dance, she is in Ballet, Tap and Acro. She loves playing with her brother, cousins and friends. She has not let epilepsy stop her from being adventurous. We hope she continues to see her life as she does now and not have epilepsy stop her from doing what she wants.
We are so very proud of Emilia and it’s important to us to spread awareness of living with epilepsy to help support others and their families.
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.