Mak­ing his mark

Nine-year-old uses mother’s ex­pe­ri­ence to help raise aware­ness

The Compass - - FRONT PAGE - BY MELISSA JENK­INS

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.

Strug­gles

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.”

Los­ing time

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.

Lim­i­ta­tions

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.

Evan’s plan

“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.

PHOTO BY MELISSA JENK­INS/THE COMPASS

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.

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