Kiara’s Story: National Epilepsy Awareness Month

Written by Ambassador Advisor and Grandview Kids parent, Abby V.

March is national epilepsy awareness month in Canada, and Grandview Kids hopes to encourage people to acknowledge and understand the disorder and support dismantling the misconceptions, discrimination and isolation facing those who live with epilepsy.

At eight months of age, Grandview Kid Kiara was diagnosed with infantile spasms, which later developed into epilepsy. The seizures occurred when she awoke from sleep, manifesting as uncontrollable body “twitching” and irregular eye movement that could last up to five minutes, with more than 200 spasm clusters. The severity of the seizures required strong medication to stop them. Initially, Kiara was prescribed Vigabatrin, but when it proved ineffective, Levetiracetam was introduced, and Vigabatrin was gradually reduced. Her parents, uncertain about her future, feared seizures would become a daily struggle. Remarkably, Kiara remained seizure-free for nearly five years.

However, one day Kiara experienced a “breakthrough seizure” that lasted an hour. It was summer, and the family had just finished dinner and was relaxing at home when Kiara suddenly began to scream in pain and became inconsolable. Her parents, initially thinking it was due to fatigue, put her to bed. But when her father, Mahendra, checked on her, he noticed she had wet the bed and was twitching and unresponsive. An ambulance was called, and paramedics administered rescue medication, but the seizures continued until they reached the hospital.

Just four months later, Kiara had another seizure. This time, although conscious, she was unable to speak, and half of her body was paralyzed, with her right side completely shut down. During the 20-minute wait for an ambulance, Kiara experienced a seizure lasting two and a half hours, with twitching and foaming at the mouth. Despite several doses of rescue medication, her seizures persisted. It was then decided that Kiara would need an additional daily medication, Clobazam, to help control the seizures.

It has been more than two years since Kiara’s last seizure. Since her first major seizure occurred while she slept, Kiara now co-sleeps with her mother, Nerissa, to ensure her safety. Though she is seizure-free, the family remains vigilant. Unfamiliar body movements, headaches, or even extreme weather (heat or cold) require extra caution. Kiara’s spasms and seizures presented differently, making it difficult to identify triggers and further complicating prevention.

Watching a child in pain and feeling helpless is a trauma no parent should endure. The experience of being a “medical parent” without clear guidelines or treatment plans is equally frightening. Nerissa credits her husband for being a voice of reason, offering advice that helps ground her when the demands of medical parenting become overwhelming.

“You can’t stop life. You can’t prevent these things. You have to go with the flow. Live life and enjoy [Kiara] being healthy now. You can’t stop her growth and her life because of [our] worries and overprotectiveness. Just breathe, and everything will be okay. The seizures have always stopped, and we have resources (the right support, doctors, medications). Don’t project your fears and concerns onto your child.”

While the worry never fully disappears, Kiara’s family has learned to regain some control. Every November 15, they celebrate Kiara’s anniversary of being seizure-free, complete with cupcakes and candles. They sing “Happy Seizure-Free to You,” turning the milestone into a positive celebration. Each year, Kiara proudly declares, “I did it again!”