Black tie event to raise funds for epilepsy research

A fundraising gala for Epilepsy Canada, coming up this Saturday in Niagara-on-the-Lake, is all about a friend helping friends.

Carson Tucker, a carriage driver in NOTL, has a friend who is a carriage supporter, and who has also been working for several years at the Prince of Wales Hotel, at the same corner as the King Street horse-and-carriage stop.

His friend, Eric Van Noort, has had to take a break from work recently. Now 23 years old, Van Noort was diagnosed with epilepsy at the age of 19, when he had his first seizure. He’s been told it may have been as a result of a brain injury at some time in his life, or possibly something he was born with.

He got his first job at the Prince when he was 15, where he started as a bus boy. Since then, he’s been a porter and server, but has had to take time off due to the frequency of seizures.

He’s been on a new regimen of medication over the last three months, and in that time has had eight seizures, some of them at work, “and some of them pretty bad,” he says.

They typically start as a focal seizure, he says, with symptoms that include “staring off into space,” and become “a full space-out. It’s like you’re not there. You’re gone.”

If he’s around family or friends, it’s a signal to them of what’s to come, which is a good thing — they know what’s happening, and when it progresses to a grand mal seizure, which can include shaking, convulsing and breathing problems, he may fall, and they’re prepared to catch him.

“I’ve had that happen plenty of times,” he says.

Afterward, his body is usually very sore, “like I’ve had the crap beaten out of me,” although he doesn’t remember anything that happened.

And obviously, he adds, the Prince of Wales is not where you want to be when that happens, thus the need to take time off until his medication stabilizes and the number of seizures is reduced.

Vintage Hotels and the people he has worked with have been extremely supportive, he says, even supplying him with video from a security camera taken when he had a seizure at the Prince. By watching it, his neurologist was able to glean some information about his seizures and where they are likely to be occurring.

He refers to them as “little lightning storms in my brain,” likely in the right temporal lobe.

He has more tests coming up to confirm that.

He explains that he has already spent 17 days in an epilepsy monitoring unit (EMU) at the Toronto Western Hospital, in a specialized environment, with continuous monitoring that helps to pinpoint the location in the brain causing seizures. That helps determine appropriate treatment and medication, he explains.

The next step is another stay in the EMU, this time for intracranial surgery, which means instead of electrodes on his scalp, they will be placed under his scalp, requiring surgery. He has an appointment for this procedure later in January.

Van Noort says he resisted this for some time, because the purpose of it is to determine more definitively where the seizures are occurring, with an end game that could include surgery to remove that part of
his brain.

“I wasn’t too keen on the surgery, so I was saying no,” he says. “Now I’m open to it. I’ve talked to people who have had it and have found it to be very successful. I’d like to think they’ll be able to cut out the right part,” he jokes.

He has also become more aware of the impact epilepsy has on his life, and is willing to consider surgery to get it back to where it was before the diagnosis.

For instance, he says, he had a driver’s licence then, and a sports car he loved. Now he can’t drive, and he misses the ability to get in the car and go where he wants to go. His independence is severely restricted, especially living in NOTL, where transportation is
difficult. 

He praises his parents — Sharon and Rob Van Noort, busy people who are running a business — for everything they do to help him, taking him to appointments, and anywhere else he needs to go. “I’m so grateful for my parents and all my family,

for everything they do to support me,” he says.

He’s also very thankful to Tucker for organizing the Purple Ribbon Gala to raise money for epilepsy research.

“I was stunned when I heard he was doing this,” says Van Noort, “and really, really pumped. I’m blown away by all that everyone is doing.”

The more money raised for epilepsy research, to discover new medications and “new ways to fix this,” he says, “the better it is for all of us. It’s not easy to live with, and I consider myself one of the more fortunate ones.”

The difficulties, chiefly his loss of dependence, are something he tries to “get past and deal with,” realizing there are many others who are dealing with the same issues and worse. 

“There are days when I feel down about it, but you’ve got to kick through those days and try to stay positive.”

That doesn’t stop him from hoping there are better days ahead, maybe getting his driver’s licence back to regain the independence a young adult expects.

But what he really wants, he says, “is some peace in my life. Just that. Peace.”

Tucker says only about $440,000 is being spent on epilepsy research across Canada. With Van Noort Florists, Pillitteri Estates Winery, Big Head winery, Grape Escape Wine Tours, The Garrison House, the Frischkorn Family Foundation, and Seacore Seafoods sponsoring the event, and other businesses donating prizes, it should help raise some money for research and awareness of epilepsy.

“Not too many people are educated about epilepsy,” says Tucker, who has also learned recently that the disease affects about one in 100 people in Canada, and sudden unexpected death from epilepsy occurs in about one in 1,000 people.

“That’s more loss of life than any other brain disease,” he says.

The black-tie gala, Jan. 11 at the Queen Street Court House beginning at 8:30 p.m., includes hors d’oeuvres by Gooddine Catering, a cash bar, and live music by X-Prime. Tickets start at $60.

For more information, to buy tickets or make a donation, visit https://www.epilepsy.ca/black-tie--purple-ribbon-gala.html.