Special to The Lake Report
July 4th, 2016, is a day I will never forget.
I had just returned home from work when we received a call that Eric was in an ambulance and on his way to hospital.
We were told by the paramedics that witnesses said he had what looked like a seizure. My husband Rob and myself went to hospital to be with our son. Because it was suspected that Eric may have had a seizure, scans were ordered to rule out any brain tumours or other abnormalities.
Everything came back negative and Eric, 19 at the time, was referred to a neurologist.
He came home and we waited for our appointment to see the neurologist. During this time Eric was able to work and drive his car. For those of you who know my son he loved to drive and loved his car.
He also loved his job as a server at the Prince of Wales Hotel. Life was pretty darn good.
I did not believe for one minute my son had a seizure that day on July 4. I honestly thought it had something to do with the heat that day and he was dehydrated.
Then the day came when Eric had his visit to the neurologist. He had to stay up for 24 hours prior to the appointment and to help get himself through that night he spent hours cleaning his car.
As part of his assessment, a sleep-deprived EEG was conducted. The EEG, a test used to assess problems related to electrical activity of the brain, showed positive for a seizure disorder.
Eric was advised that he would lose his licence to drive and was to start antiseizure medication. I can’t even tell you how I felt for my son that day. We were both in shock and, I have to say, still in denial.
How can you be diagnosed with a seizure disorder after one episode? There was so much we did not understand.
With the help of our family doctor here in Niagara-on-the-Lake we asked for second opinion. We were able to get an appointment in Toronto with a neurologist in January 2017.
On New Year's Eve day, I was at work and I got a call that Eric was having a seizure at home. I came home and found him on the floor with my daughter holding his head.
We called an ambulance and he spent New Year's Eve and New Year's Day in the hospital. The fortunate thing was that we had an appointment coming up in a few short weeks with a neurologist who specializes in seizure disorders.
At Toronto Western Hospital, we were met by a team of specialists. I felt from the moment we arrived in the Epilepsy Unit we would be able to sort out what was going on with our son.
As it turns out Eric does have a seizure disorder – he has Epilepsy.
Eric is also one of the strongest young men I know. I also know that I am very grateful for the care and support we get from Toronto Western Hospital as well as our own hospital in Niagara Falls.
Many times we have had to call an ambulance for Eric and the expertise of our paramedics, as they are the first to arrive, and then the hospital staff at Greater Niagara General Hospital are excellent. I am also very grateful for our pharmacist. I can’t even begin to tell you how much support they provide.
The major form of treatment for epilepsy is long-term drug therapy. Eric has been on many different cocktails of medication and they do not stop the seizures.
The doctors call it “medically refractory epilepsy” and that means the medicine isn’t bringing the seizures under control. With our team of specialists in Toronto, Eric started the process to determine if he was a candidate for diagnostic brain surgery to see if his seizures could be surgically fixed.
On Feb. 7, 2020, Eric entered hospital for this diagnostic brain surgery. Fourteen electrodes were surgically implanted into his brain and after 30 days in hospital he went back into surgery twice to have the electrodes removed.
He arrived home with 40 staples in his head and a long recovery ahead.
We realized it was going to be many months before we would know any results from his diagnostic surgery – and then with the COVID-19 pandemic everything has been put on hold.
The scary thing is that Eric, who is now 23, continues to have seizures.
As we wait for some sort of plan for Eric, we are doing some fundraising events for epilepsy research. My hope is that with more research more can be done for my son and others suffering from this neurological disorder.
During July and August we will hold different fundraisers to reach our goal of raising $10,000 by Sept. 1. To date we have raised close to $1,000 and we hope to generate more this weekend with a garage sale at our family's business, VanNoort Florists in Virgil. The fundraiser is Friday 10 a.m. to 5 p.m. and Saturday 10 a.m. to 2 p.m.
I feel at this point we all know that social distance and masks are required at the sale because we all need to stay safe. Please help us raise some money because every day in Canada 42 people learn they have epilepsy.
Research is hope and I do have hope for better days ahead.
* Sharon VanNoort owns VanNoort Florists in Virgil.