Making his mark
Nine-year-old uses mother’s experience to help raise awareness
If you ask nine-year-old Evan Newhook of Dildo what his favourite thing to do is, he’ll say draw.
The outgoing Woodland Elementary student has a set of drawing pencils, a sketchbook and a Crayola Sketch Wizard, which he received for Christmas. He loves to draw trucks; they are his specialty.
One of his most popular drawings to date is a butterfly, but it’s not just any butterfly. It has a purple epilepsy awareness ribbon for a body. Evan’s mom, Lisa, has epilepsy. But why draw a butterfly? “Butterflies are strong, like my mom,” he told The Compass during a chat at his family’s home.
The picture, which includes the sun, bees and flowers as well, was turned into a bookmark as a fundraiser to raise money for Epilepsy Newfoundland and Labrador.
“The sun, the bees and butterflies all have a cycle/schedule just like my mom does with her epilepsy. If the cycle/schedule is off, there are no bees, flowers or butterflies, and for my mom, there are seizures,” Evan says.
Epilepsy Newfoundland and Labrador recently named Evan an ambassador for the organization’s Purple Day on March 26, and he is excited to spread the word.
Lisa and her husband Billy moved from Ontario over a decade ago. At that time, Lisa had not been diagnosed and was unaware of what caused the handful of seizures she had experienced.
Some seizures can cause a person to blank out or appear to daydream, while others cause violent convulsions and a loss of consciousness. The latter is called a grand mal seizure. The Mayo Clinic website refers to these types of seizures as “the type of seizure most people picture when they think about seizures in general.”
At that time, Lisa, who is now a 33-year-old mother of three, had only experienced a handful of grand mal seizures, but the tests she had received up until then were inconclusive.
In 2003, after a sleep-deprived electroencephalogram, a neurologist in St. John’s gave a diagnosis of epilepsy.
“It’s a bumpy road,” the softspoken woman says. “It’s great knowing it’s epilepsy, but it’s scary.”
Since her diagnosis, Lisa has been more aware of the number of seizures she experiences. In fact, they have been “more constant” over the past year-and-ahalf.
Other seizures she experiences involve being conscious but unable to move or ones similar to daydreaming, without the memory of them. She still gets grand mal seizures sporadically.
Her most recent episode was on Christmas Day, but she believes it’s because she was stressed from having an extended bout of bronchitis, and the family’s printing business had been “very busy.”
A change in medication has allowed Lisa to experience fewer seizures. But, taking the medication has a price.
“I’ve taken a lot of medications,” she explains. “Most affect memory and cause weight loss.”
After a few weeks on the newest medication, Lisa went from 122 pounds to 101.
“People are always asking, ‘ Are you ill? Are you sick?’ It’s hard to adjust to,” she says.
Her short-term memory is also affected.
“I have to write everything down,” Lisa states, adding the notes go in her pocket or on the fridge.
Evan also helps if she forgets things by reading notes left on the fridge and reminding her of things like appointments.
Although the memory loss is not funny, the family jokes about Lisa forgetting things. She even chimes in herself with jokes.
“We just had to learn to live with it,” husband Billy explained.
Brayden, Lisa’s youngest son, had a seizure last year. So far, Evan and her other son Joshua haven’t experienced any.
Having epilepsy means not being able to drive. Lisa is also no longer allowed to go on walks alone.
“My mom can’t go on walks by herself or take us to parks,” Evan explains.
“I already couldn’t drive, and now you’re taking my feet away as well?” Lisa recalls telling her doctor.
Evan has memorized his phone number and Lisa has numbers programmed into her phone.
Although things have been difficult, Billy has advice for those who have a loved one with epilepsy.
“It’s part of everyday life,” he explains. “Just get familiar with it, know the signs and know what to do.”
Epilepsy Newfoundland and Labrador lists what to do when someone is having a seizure on their Facebook page.
Protective measures include giving the person space, protecting them from injury, loosening things around their neck, putting something soft under their head and turning them on their side to prevent choking. If the seizure lasts more than five minutes, call an ambulance. And never hold someone down while they’re having a seizure.
“When I was younger my mom took a seizure,” Evan explained. “And I sat next to her.”
He says he wants more people to understand what epilepsy is and know what to do if they see someone having a seizure.
“I was talking to my friends and I told them all about epilepsy,” he exclaims.
As am ambassador for Purple Day, Evan will help raise awareness.
“On March 26, everybody in the school is going to wear purple. And I feel like I’m selling bookmarks to the world.”
Lisa believes Evan is very empathetic and wise beyond his years.
“I’m very proud, of course,” she says. “He made me want to get involved. He made me realize we should be involved.”
If you want to purchase Evan’s bookmark or a Purple Day T-Shirt in aid of Epilepsy Newfoundland and Labrador, contact Lisa or Billy at 709-582-4566, or visit Baccalieu Images in the Trinity Conception Square mall in Carbonear.
Or for more information on epilepsy, contact Epilepsy Newfoundland and Labrador at www.epilepsynl.com or call (709) 722-0502.
The Newhook family lives every day with the possibility that mom Lisa will experience another seizure due to her epilepsy. Members of the Newhook family are, front (l-r) — Joshua and Brayden; back — mom Lisa, Epilepsy NL ambassador Evan and dad Billy.