Meet Emilia, one of our brave #FacesOfEpilepsy contributors.

When Emilia was just 3 weeks old her parents noticed that when she would sleep her eyes would open and close but be rolled back and her head would lift up. They later found out those were seizures. Doctors would later find a ‘birthmark’ on Emilia’s occipital lobe, which would mean that she will need to continue on with medication indefinitely.

“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.”

Meet Kassidy, one of our brave #FacesOfEpilepsy contributors.

Kassidy started having “episodes” when she was 10 years old. She would lose the ability to speak. After countless MRIs, ECGs, Ultrasounds, and even a therapist all of the appointments ended with the doctor saying “I’m sorry, I see nothing wrong”. She was told it was anxiety and that it was all in her head.

5 years later she was finally diagnosed with epilepsy which was causing focal seizures. These seizures were the reason she couldn’t speak. She was grateful for an answer, and finally felt heard for the first time.

Meet Colson, one of our brave #FacesOfEpilepsy contributors.

Colson is 15 months old and suffers from frontal lobe brain damage. He was diagnosed with epilepsy shortly before his first birthday. Colson’s constant happy personality and vibrant smile helps heal the trauma his family faced. Despite the diagnosis, his parents felt comfort in knowing that there are supports for families in Canada.

For them, a cure for epilepsy would mean Colson could continue to thrive and enjoy life without the reminder that he is different and needs to adjust his activities around his diagnosis.

Spreading awareness about epilepsy and knocking down misconceptions is so important to the Barker family.

Meet Adel & Manel, two of our brave #FacesOfEpilepsy contributors.

Adel Bounif’s daughter is 11 years old and is suffering from the Dravet syndrome. After his daughter’s diagnosis Adel called it upon himself to bring awareness of this rare disease, and become an advocate for the epilepsy community. He wrote a book called «Epilepsy the invisible pain » and published a comic for children which gives me the opportunity to go to schools in order to educate children about epilepsy and the stigma linked to this condition.

His fierce love of his daughter is evident in his beautiful words: “Caregiving often calls us to lean into love we didn’t know possible. Caregiving gives you courage and strength despite chronic stress and restless sleep. It’s not the daily issues that break you down, it’s the way you carry it. Although your heart is broken, you try to push yourself every day for your child.”

Meet Samara, one of our brave #FacesOfEpilepsy contributors.

Samara is 16 years old and was diagnosed with Epilepsy when she was 12. Despite her diagnosis only being four years ago, her life has changed dramatically.

Samara will never forget the first time she had a seizure around her classmates at a new high school. She was embarrassed. No one had ever seen someone have a seizure or knew what epilepsy was. She says a positive thing to come out of that experience was being able to educate others about epilepsy. Since then she has made educating others about Epilepsy a life goal of hers and is excited to share her journey.

Meet Yaro, one of our brave #FacesOfEpilepsy contributors.

Yaro has been diagnosed with rare form of childhood epilepsy, Infantile Spasms, at 8 months old. Which led to the discovery of his underlined condition, a genetic disorder Lissencephaly.

Yaro’s mother says “having your child diagnosed with life limiting condition is hard, so you adjust your level of dreams and dial down expectations of your parenthood. You find new grind, new norm, new dreams and create new opportunities. But drug resistant epilepsy have stole that, too, from our family. We have lost our son to the ongoing seizures.”

Meet Catherine, one of our brave #FacesOfEpilepsy contributors.

Catherine has lived with epilepsy for 34 years. She was diagnosed when she was 5 years old. Within days of her diagnosis a neurosurgeon recommended she be sent out of province for surgery. The day after her 6th birthday, she boarded a plane with an unknown future ahead. From ages 6-13 she tried a variety of medications at high dosages, but her seizure activity was frequent and intense.

Catherine’s hope is to one day work as a Counsellor for individuals and families coping with the impacts of Chronic Illness. As she herself have felt the struggles and isolation of coping with a chronic illness.

Meet Bianca and her mother Carla, two of our brave #FacesOfEpilepsy contributors.

Bianca’s mother Carla is a fierce advocate for her daughter’s health and the importance of raising awareness for epilepsy.

She is a mother. She a warrior. She has a voice – and she’s using it.

Meet Gail, one of our brave #FacesOfEpilepsy contributors.

Gail has been living with Epilepsy for 28 years. Her childhood was difficult, she describes this time as “just existing.” Her seizures continued from preschool all through high school. Finally at age 17 her neurologist found a combination of drugs that worked.

Even though she believe epilepsy has put a pause in her life, she has learned to not only embrace this part of who she is, but to become a vocal advocate.

Being an advocate, Gail seeks every opportunity to spread awareness by doing media interviews (radio & television) planning and organizing Virtual Epilepsy Forums, Epilepsy Walks and also hosting the monthly online meeting. Finding a cure for Epilepsy would mean “FREEDOM” for her.

Meet Emily, one of our brave #FacesOfEpilepsy contributors. Emily had her first seizure in the middle of the night at 4 months old. Since then Emily has had 36 more seizures and has been diagnosed with Dravet Syndrome. She's now 5 years old and in Kindergarten in a special assistance class. A cure for Emily's epilepsy would be life changing for our family. We can never relax as we always have to be vigilant and ready with rescue meds.

Meet Sheena, one of our brave #FacesOfEpilepsy contributors. Sheena was diagnosed with epilepsy when she was 25. Prior to her diagnosis, she was misdiagnosed as having panic attacks. Sheena believes one of the major challenges of having epilepsy is the lack of needed medical care and research. Sheena believes that finding a cure for epilepsy would not just help make her life better but also the people she loves and cares about.

Meet Allison, one of our brave #FacesOfEpilepsy contributors. Allison was 21 when she had her first seizure. She was in denial, and didn’t want to take my medication, however she did. The following years she continued to have seizures. She was beyond frustrated. She wanted her life back, she wanted her independence back. Since then, Allison has found peace in her mental health and embraced her life with epilepsy. She wants people to know it’s okay to be upset and frustrated, epilepsy is a part of you, but don’t let it control you.

Meet Dominic & the Kilgour Family, one of our brave #FacesOfEpilepsy contributors. Dominic’s epilepsy journey began with a febrile seizure when he was just 3 years old. He now at 9 years old, currently has a diagnosis of Lennox-Gastaut Syndrome (LGS). By sharing Dominic’s story, the Kilgour Family hopes to help educate, raise money for a cure and hopefully help to end the stigma around seizures.

Meet Mehrshad one of Epilepsy Canada’s incredible volunteers. Mehrshad contributes to Epilepsy Canada by increasing the public’s awareness and knowledge of epilepsy by writing epilepsy research news articles.

Meet Peter, one of our brave #FacesOfEpilepsy contributors and Outdoor Mindset Ambassador. Diagnosed with temporal lobe epilpsey at age 40, after experiencing epilepsy symptoms for a decade, Peter turned mountain biking has been a refuge, a place to work through all of life's twists and turns by pushing through the actual twists and turns of the trail.

Meet Matana, a mixed media artist based in Toronto, Canada and vocal advocate for epilepsy. Throughout her final year of her Master’s Degree in Interdisciplinary Arts Media and Design at OCAD University, she is continuing to create a voice through art practice for those with special needs, disabilities, and other challenges.

Meet Kristen, Troy and Lily. A brave family sharing Lily’s inspiring story living with epilepsy and their parenting journey through it, all while advocating for awareness and a cure.

In honour of Epilepsy Awareness Month Kristen shared with us her perspective and the things she’s learned being Lily’s mom.

Meet Michael, one of our brave #FacesOfEpilepsy contributors. Michael, who was shocked to be diagnosed at 51, is a surprising and sobering reminder that epilepsy does not discriminate… anyone at any age can be diagnosed with this terrible disease.

Dom lost his life to SUDEP on May 9th 2021. Two months from his 18th birthday.

Dom’s family’s hope is that his life and memory can inspire others living with this condition. That it can comfort the scared first time parents who received the news that their child has epilepsy. That it can give that frightened overprotective mom the courage to let their baby learn to swim even though she was told to be careful and not take risks. That it can give a child who is feeling weird the strength to get up each day and find the joy in living.

Meet Alexa, one of our brave #FacesOfEpilepsy contributors. Alexa was diagnosed when she was 10. She was scared, confused and embarrassed. She never talked much about her condition and was ashamed and didn’t like that she was different from my friends. As she has gotten older, she has accepted that Epilepsy doesn’t define her. She’s thankful for the medication she takes everyday. And is now more open with talking about Epilepsy and comfortable sharing my story.

Alexa feels epilepsy is so misunderstood and not enough people take the time to learn about it. She wants to encourage others to talk about their epilepsy and be open about it.

She is proud to say that she has epilepsy and is no longer afraid to share her journey.