Epilepsy warriors Evan (right), older brother Beau (left) and younger brother Luka (centre).
A Niagara Health nurse shares the story of her son Evan and why her family is asking the community to wear purple for epilepsy awareness on March 26.
Evan loved the bus.
If The Wheels on the Bus started playing, he would break into a smile instantly.
The four-year-old loved music, being outside and anything that lit up or made noise. Painting was another favourite activity, often with his toes before his hands, creating colourful works of art that reflected the joy he carried everywhere he went.
“Evan always smiled,” says his mom, Teanna Curcio, a Registered Practical Nurse in the Emergency Department at Niagara Health. “Living every day with him was a joy.”
But when Evan was just 28 days old, he was diagnosed with a complex seizure disorder, beginning years of appointments, therapies and hospital care.
Before Evan’s diagnosis, Teanna and her family had some experience with epilepsy, but they didn’t yet understand how different and complex each case can be.
Evan’s older brother Beau also lives with epilepsy, though his condition is well managed and he has not had seizures for years. Early on, the family hoped Evan’s journey might follow a similar path.
Instead, Evan’s condition progressed rapidly.
Just one month before his fifth birthday, Evan passed away, surrounded by the love of his family.
When colleagues learned what Teanna and her family were facing, they stepped forward in ways she will never forget.
“The support I received from Niagara Health was exceptional,” Teanna says. Meals arrived at the door. Donations helped ease financial stress. Colleagues offered comfort, encouragement and quiet acts of compassion during the hardest days. “It made me proud to work where I work.”
Despite the challenges he faced, Evan was never defined by his illness. He was a bright little boy with what Teanna describes as “the most contagious smile and a laugh that could fill a room.”
“Epilepsy awareness is deeply personal to me because it changed our entire world,” Teanna says. “Evan lived with complex seizures that were never fully explained. Despite countless appointments, tests and specialists, we never received the clear answers we were hoping for.
“Epilepsy is often spoken about in numbers and statistics, but behind every number is a person, a child, a parent, a sibling and a family whose life has been forever changed.”
This year, friends, family and colleagues are wearing purple shirts in Evan’s honour for National Epilepsy Awareness Day on March 26.
For Teanna, the shirts represent something deeply meaningful. “We want to continue to speak Evan’s name,” she says.
On March 26, she hopes people will join her family by wearing purple and learning more about epilepsy.
“When people wear purple, I hope they remember that it represents more than a colour,” she says. “It represents every life touched by epilepsy, every family searching for answers and every child like Evan whose story deserves to be seen, heard and remembered.”
And perhaps, when they hear The Wheels on the Bus or see a child’s joyful painting, they will remember a little boy who always smiled.
Evan painting with his toes.
Evan's family sporting their purple t-shirts in support of epilepsy awareness.
