Summer UpdatesGreetings from the Chief Executive Officer
I hope that everyone had a wonderful summer! We have had some excitement around the office over the last few months! Firstly, our ESWO family grew again, and we are happy to announce the arrival of Bailey’s sweet baby boy Bryson! In late June, we hosted our first ever youth conference which was truly an empowering day for those in attendance. Lastly, I was invited to speak about our Public Education programs in the schools at the International Bureau for Epilepsy conference in Thailand. Amazing to share ESWO programs on an International platform and to learn about all of the fantastic work being done around the world to improve the lives of people living with epilepsy!
With the change of the season, comes back to school time…and we would like to remind parents about our Education Programs to create awareness in the classroom, and teacher in-services to provide resources for educators. Please let us know if we can be of assistance! Fall also means our Annual 2.5K walk/5K fun run is just around the corner! You can find more details within this newsletter…hope to see you all there!
Living With Epilepsy
Chief Executive Officer
When Dekson was born, the family had thought he was perfectly healthy. But the baby experienced his first seizure when he was only 19 months old, and their lives changed.
“At the end of July we switched Dekson from the crib to the toddler bed so that we could use the crib for the newborn,” explained Katelynn Thibert Dekson's mother. “We thought Dekson was going through behavioural tics just from stress with the new baby and the new bed.”
“But one day I noticed that his shoulders shrugged up and his eyes rolled back into his head. So we took him to our family doctor, and were given a referral to get bloodwork done and see a neurologist,” said Thibert.
When the results came back, the one-and-a-half-year-old was diagnosed with epilepsy. The parents had a hard time coming to terms with this news.
“We were kind of blindsided because we honestly thought it was a tic. We thought he was just going through a lot and he was acting out basically. We weren’t expecting that diagnosis at all - we thought the doctor was going to clear us and send us home.”
Dekson was started on medication right away, and was immediately sent to the hospital for EEGS. The new parents were utterly overwhelmed.
“We had to really struggle with quickly learning what epilepsy was. We basically had to become teachers, researchers, advocates, doctors and nurses. We had to take on all these roles as parents and we already didn’t really know what we were doing. Dekson was only a year-and-a half old, so we were new at the parenting thing to begin with. I would just feel angry and hurt all the time; angry that Dekson was going through all this,” confessed Thibert.
This changed when Dekson's neurologist referred the family to ESWO. By providing a PowerPoint presentation about epilepsy and connecting Thibert and her husband with epilepsy support groups, it helped to get the parents involved and educated about their son’s condition.
“When I thought of epilepsy before the diagnosis, I assumed that anyone who had epilepsy was an adult and that they only had tonic-clonic seizures,” admitted Thibert. “My lack of knowledge made me believe that there was one or two types of seizures and that babies don’t get it.” At the support groups, Thibert was able to connect with other parents who experienced the same feelings of grief and loss. It helped to show the young mother that she’s not alone. “It’s not easy and you don’t have to pretend that it’s easy,” she said.
Win A Magical Family Trip To Disney
Back to School
Education for Teachers, Classmates and School Staff
Back to school means #ThinkingAboutEpilepsy! Did you know that ESWO and community epilepsy agencies provide free education to teachers, classmates and school staff about Seizure First Aid, epilepsy and the brain!
Contact your local agency or firstname.lastname@example.org to book a free education session or learn more.
Windsor Corporate Challenge
Enter for your chance to win a Magical Family Trip To Disney! Proceeds to support Epilepsy Southwestern Ontario. The winner will be selected on Monday, October 15th at 9 AM at the Vollmer Complex in LaSalle.
Tickets will be on sale until Monday, October 15th. Tickets are $50 each with only 400 tickets available. You must be 18 years or older to purchase a ticket.
Shop Our Purple StoreSchool SuppliesAs we head back to school we are all in need of new school supplies! Purchase some March Is Epilepsy Awareness Month pencils for the school year and support ESWO.
Visit our online shop here and get yours today.
|Epilepsy LinksWhat's Happening on the Internet
|Regional News & EventsLondon Middlesex
Support Group Meeting
6th Annual Seize the Day Run/Walk
- Please join us September 17, 2019 from 7:00pm – 8:30pm at our support group where a guest speaker from LivaNova will be presenting on VNS (Vagus Nerve Stimulator).
- Third Tuesday of every month at 7:00 p.m. – 8:30 p.m.
- Next Meeting Dates:
- Tuesday, October 15th
- Tuesday, November 19th: Dr. Mike from ReadyToGoClinic presenting on medical cannabis
- Discuss experiences and learn new information in a judgement-free environment
- ESWO Main Office - 797 York St. Unit 3, London
- Please RSVP to 519.433.4073 or email@example.com
With less than a month to go, ESWO will be holding our 6th Annual Seize the Day 5k Run / 2.5k Walk on Sunday, September 29, 2019, 10:30 a.m., at Graham Family Eco Park, 15769-, 16033 Medway Rd, Arva, ON N0M 1C0. Join us as we walk and run to raise funds for epilepsy education, support, and community engagement programs for local communities in Southwestern Ontario. This fun-filled family event will include a run and walk, followed by a community BBQ.
- Register in advance for $20 or at the event for $25
- Receive a free t-shirt and have your registration fee waived if you submit $150 or more in pledges
- Beat the lines! Pre-register, drop off your pledges and pickup your t-shirts in advance. ESWO will be hosting two pre-registration days on Thursday, September 26 or Friday, September 27 from 4:30-6:30pm.
- Custom Buttons: Pre-order your personalized buttons for $5 to pick up at the event or at pre-registration. Group deals are available. Please submit your order and photos to: firstname.lastname@example.org
- Would you like to run or walk in memory or support of somebody? Send your “I’m Walking For” pictures to email@example.com
- We are looking for 3 - 4 families (including the child if possible) who have had invasive surgery and 2 - 3 families (including the child if possible) who have had VNS implemented to join us for a focus group on October 9th at 6:30 p.m. at our office (797 York St., Unit 3, London)
- The Department of Pediatric Epilepsy at Children’s Hospital, London Health Sciences Centre (LHSC) is interested in conducting a focus group session that is meaningful and of interest to their post-surgical epilepsy patients and their families. In this effort, they want to better understand the experiences and outcomes that were important to families. It is their goal to assist their patients and families in the pre-surgical decision making period, and learn more about what worked and what would be helpful to future patients and families.
- Please RSVP to firstname.lastname@example.org if you are interested in attending.
Chatham Kent Introduction to Restorative Yoga
- Join us for ESWO’s Fourth Annual Dueling Pianos event. Dance and sing at an all request Halloween themed piano showdown!
- Friday, November 1, 2019, 6:00 pm – 12:00 pm
- Goodwill Industries, Conference Centre (255 Horton St. E, London)
- Purchase your tickets in advance! Tickets price: $40, includes hors d’oeuvres and live entertainment
- 19 + ID required.
- Cash bar
- Costume contest for best dressed
- More event information can be found here.
Lexi Crowe - Osler Epilepsy Scholarship 2019 winner and hometown hero
- ESWO Chatham-Kent is excited to explore a way to ease your mind and reduce your stress in an effort to reduce seizures.
- Monday, September 16, 2019
- 6:00pm - 8:00pm
- Generously offered by Instructor Jacqui Waddick and the Relational Mind Centre (Sati Hall)
- 21 McKeough Ave, Chatham
- Space is limited so register by emailing Sandra at email@example.com
- Cost - Donation
“I was diagnosed with epilepsy when I was in the first grade. I had an absence seizure where I would just briefly stare several times in a day,” explained Crowe. “The older I got, the more frequently the seizures happened. I would still stare, but with my head turned to the right and I would usually fall forward as the seizure ended.”
Crowe, being just a young girl when her seizures began, had trouble understanding her situation at first.
“I was too young to comprehend what was happening at the time. My mom had to explain to my friends later on what was happening to me,” she said. “But, an ESWO educator came into my classroom and did a presentation on epilepsy awareness and first aid.”
11 years later, the 18-year-old is still experiencing seizures, but of a different kind. They are called focal dyscognitive and bilateral seizures, which cause Crowe to lose consciousness and fall backwards with jerking movements of the arms and legs. The seizures are triggered by heat and overexertion, which can limit social, educational, and athletic activities Crowe can participate in.
The Crowe family has struggled with watching Lexi go through this difficult journey at such a crucial stage in her life. Her mother Becky explained how difficult it is to have her child miss out on things, like hockey games or parties, because if she has a seizure she has to come home to recover.
On January 14, 2019, Crowe had the Vagus Nerve Stimulator (VNS) surgery. The operation involves inserting a small battery under the chest wall that produces mild pulses of electrical energy to the brain via the vagus nerve. The decision to get the VNS done was made because Crowe had been on almost every seizure medication with no long term control.
“When Lexi got the VNS, an ESWO Educator went into her school to explain to the teachers the new technology. The school has always been very accommodating to any request we have for Lexi,” said Becky.
ESWO continues to support the Crowe family in other ways, providing education to teachers, classmates and friends so that they know what to do in case of a seizure. Becky believes that teaching others about epilepsy is the best way to be provide support and spread awareness about epilepsy.
“Education is key to saving lives,” she said. “There are so many questions that you have when your child has epilepsy. ESWO has always been a great source of information and a wonderful connection to meet other families going through the same journey.”
It’s been a difficult path for Crowe, but she is hopeful for the future of epilepsy. She feels that by increasing awareness about epilepsy, more people will begin to pay attention to it. “I want more people to acknowledge it and not be afraid of my seizures, that’s why I am doing this interview,” said Crowe. “I want people to understand what a seizure is and what to do about it.”
In August 2019 Lexi was awarded the Osler Epilepsy Scholarship 2019, one of four $1,500 scholarships to assist with her post-secondary plans… http://epilepsyontario.org/programs/obcl-awards/
We at ESWO congratulate Lexi on this wonderful honour.
Windsor EssexSupport Group Meeting
3rd Annual Seize the Day Run/Walk
Third Party: 8th Annual McGregor Mug Run
On Sunday, September 22, 2019 at 10:30am, ESWO will host our Third Annual Seize the Day 5k Run / 2.5k Walk in Windsor!
The event will take place at Vollmer Culture and Recreation Complex (2121 Laurier Pkwy, Windsor, ON) to raise funds for epilepsy education, support and community engagement programs for the Windsor-Essex area. This fun filled family event will include a run and walk, followed by a community BBQ.
- The McGregor Mug Run & International Beer Fest is back for a 8th year! Race registration is now open and beer fest tickets on sale now.
- Saturday, September 21, 2019
- All proceeds will benefit Epilepsy Southwestern Ontario
- For more information you can visit their website.
- Buy your tickets for the Booze Cooler Raffle for your chance to win one of 3 incredible booze coolers! $1000 IN PRIZES! $10 each or 3 for $20.
- For more information on the Booze Cooler Raffle visit the facebook event page.
Third Party: Ride for Epilepsy
Third Party: Teeing Off For Epilepsy
- Join us Saturday, September 21, 2019 at the Ride for Epilepsy at Pyramid Recreation Centre in St. Marys, ON from 10:00 a.m. until 2:00 p.m.
- All proceeds support ESWO's Game On program which is a physical literacy program for children with neurological conditions.
- Register online at www.epilepsyride.ca
- For more information contact firstname.lastname@example.org
- Join us Saturday, September 21, 2019 at White Squirrel Golf Club (72538 Bluewater Hwy, Zurich On) for a fundraiser for Epilepsy Southwestern Ontario.
- Texas Scramble - Registration at 10 a.m. - Shotgun 11 a.m.
- $500 for 4 person team
- Fees include:
- Golf & Cart
- For more information please contact Joanne Oke at Jcoke@okewoodsmith.com