We are raising funds to support the Epilepsy South Central Ontario Sunny Days Camp.
This is a summer camp for children living with Epilepsy, as well as their siblings. Epilepsy South Central Ontario (ESCO) makes the camp accessible for all by making it affordable. Sunny Days Camp is supported by and relies on corporate sponsorship, public donations, and federal grants.
Epilepsy organizations like ESCO do not receive government funding
Our kids have been attending Sunny Days since 2022. After Kareem developed seizures and was diagnosed with Epilepsy, our options for summer camps were limited. We could send his brothers to any camp they wanted to go to but he would be excluded. General camps are not trained or equipped to keep kids with Epilepsy safe. This left us with a difficult decision. It was then I contacted ESCO and found out about Sunny Days. Not only could Kareem experience summer camp, with trained staff that can support him and keep him safe, but his brothers could go too! Sunny Days camp was the first camp our kids experienced. They made new friends, learned new skills, and went on amazing field trips.
Beyond this, Kareem gained the self-esteem and knowledge that he could do whatever his brothers could. They all learned a valuable insight that kids of all abilities can and need to be included.
Ernest seemed healthy in nearly every way after he was born. Mild asthma that would act up in the wintertime, and a febrile seizure when he had the flu as a toddler. We were told it’s common in that age with fevers, and likely wouldn’t be something we would have to worry about in the future.
Around the age of six, he started having what we would call “eye flutters”. Quick fluttering of the eyelids for a few seconds, didn’t seem to be disruptive to him at the time. Our family doctor took a look at them and decided he was having tics. She said that the tics would likely lessen over time as he got older. However, around age eight his behaviours started to change. He was more aggressive, quick to anger, and emotional. He had trouble focusing and staying in school. Kids were bullying him during this time because of his “tics” which wasn’t helping things. The doctor suggested possible ADHD and referred us to a pediatrician. The next doctor took one look and said we needed an EEG before we moved any further.
Those results changed the trajectory of our lives.
Ernest
He had over twenty short seizures in thirty minutes.
It was confirmed. Epilepsy. But just like most people who aren’t knowledgeable about epilepsy, we didn’t realize the scope of it or what that meant. After another year of testing between five-hour video EEGs, MRIs, and genetic testing, we learned that not only did he have epilepsy but he had a rare kind called Jeavons Syndrome. He would never outgrow it. He will be on medications for the rest of his life. He will never be seizure-free.
It was devastating trying to explain to an eight-year-old that he would never be able to drive a car.
But this is where our story started looking up. We had a name now. We googled and researched (because neurologists and other doctors provide a diagnosis and prescription, not much else). We learned about the types of seizures he was having because, in the beginning, I didn’t even know there were multiple types. We learned that my son also has Autism (and part of it was ADHD). We learned that I have a genetic condition through his genetic testing. Everything started making sense. And with names of things we can plan our care around them.
When he started his medication, it was a bit of trial and error. We knew it would only lessen his seizures, never fully be rid of them. He was home-schooled for a few years to help with the transitions. Now he’s back in Grade 8, and doing well!
Ernest with Mom (Jessica)
Ernest creating Epilepsy Awareness at the Blue Jays Game
We found support in the community (Epilepsy South Central Ontario being one of them!). Ernest took a role in explaining epilepsy to his friends and family, educating them because just like us in the beginning, they don’t know! It is still difficult to deal with the stressors of this disease. It is a family illness, which is one reason it’s so important for us all to share our stories. Our epilepsy warriors are some of the strongest people I know, and it’s amazing watching them grow and become such compassionate and empathetic people because they know what kind of hands life can deal you.
We built a community. I think that’s an amazing thing.
Jessica Hart (Ernest’s mom)
Stories like the one you see above highlight the crucialness of why donations are so important.
Your generous contribution will provide much-needed funding for research, education, awareness, advocacy, and client support, with the goal of increasing the quality of life for people of all ages who are living with epilepsy every day of their lives.
In the intricate fabric of life, there are threads of resilience, hope, and love that interweave with the unexpected challenges that come our way. The entry of epilepsy into our lives was abrupt and uninvited. It was a day that began like any other, with no warning signs or premonitions. Yet, in the blink of an eye, epilepsy had firmly planted itself on our radar, forever altering the course of our family’s journey.
Jordan
This is the story of my son, Jordan, who, at the tender age of three, embarked on a journey that would test the strength of our family and reveal the extraordinary courage of a little boy who faced epilepsy with a smile.
It all began on a seemingly ordinary day when Jordan was just a curious and energetic three-year-old. His laughter filled our home, and his boundless curiosity led him to explore every nook and cranny of the world around him. That night, he was nestled on the couch with his grandpa, their eyes locked on a Baby Shark special. The room was filled with the joyful sounds of laughter, and everything seemed perfectly ordinary until our reality was turned upside down.
In an instant, Jordan let out a cry of distress and his tiny body began to convulse, each muscle twitching uncontrollably. Panic and confusion permeated the whole house as my mind raced, searching for answers, but finding none.
Jordan’s face began turning blue as he began to convulse for another minute and then fell unconscious. I dialed 911 in a trembling hurry, and soon, the living room was filled with the sound of sirens as paramedics, firefighters, and police officers arrived at our doorstep. My heart pounded with worry as they rushed us to the emergency room.
In the hospital, Jordan remained unconscious, on the sterile white bed as medical professionals worked tirelessly. The room was filled with the beeping of machines, the hum of fluorescent lights, and my racing thoughts. As Jordan underwent bloodwork, CAT scans, and MRIs, I wracked my brain, trying to piece together what could have triggered this nightmare.
First ER Visit
The pediatricians explained that Jordan had experienced a seizure. At that point, there were three possible outcomes: Jordan might wake up and be his normal, cheerful self, running around as if the seizure had never happened. Secondly, he might wake up, but not quite be the same, the seizure having left its mark. The third possibility was the one that haunted my every thought: that he was already in a coma, but the doctors recommended that we cross that bridge if that dark reality unfolded. In those agonizing moments, we were left clinging to hope, praying for that first glimmer of consciousness that would reveal the path that lay ahead for our precious little Jordan.
Five devastating hours stretched into an eternity, and every minute felt like a lifetime as I cradled Jordan in my arms on the hospital bed. But then it happened. Jordan stirred, his eyelids fluttered as he woke up, looking puzzled by the commotion and wondering where we were. To our astonishment, he seemed as if nothing was wrong. His smile, though still weak, radiated innocence and joy. Tears of relief streamed down my face as I held his tiny hand, I thought the nightmare was finally over.
It was this very night that the word “epilepsy” made its unexpected entry into our vocabulary. As we sat in the sterile hospital room, the doctor gently delivered a brief explanation of epilepsy and seizures, all the while hoping that this was a one-off experience for Jordan, a solitary storm in the otherwise calm sea of his childhood. I hung on to the doctor’s every word, jotting down potential triggers for seizures, determined to reshape our lives significantly.
Jordan & Mom
We left the hospital, eager to put the nightmare behind us, only to be thrust back into the grips of fear when, not even four hours after getting discharged, Jordan endured another seizure. The terror was as fresh and chilling as the first time. The feeling of powerlessness washed over me like a tidal wave as I watched Jordan’s body convulse, noting every agonizing detail — the time, the symptoms, and every piece of information that might provide insight. A single minute felt like an eternity. Returning to the hospital because of Jordan’s second untriggered seizure, he officially received the diagnosis of epilepsy.
Our lives became a revolving door of hospital visits, tests, and uncertainties. We were pushed onto a path we never wanted to take but had no choice then to follow. Jordan began seeing a remarkable pediatric neurologist who introduced us to the incredible organization Epilepsy South Central Ontario, where we embarked on a journey of learning, understanding, connecting and coping.
Despite everyone’s persistent efforts, Jordan was deemed medically resistant. Every medication introduced held the promise of relief, only to be shattered by yet another serious seizure that sent us rushing back to the hospital. We explored every recommended avenue, subjecting Jordan to numerous tests and genetic screenings, and each time, the conclusion was the same: he was the picture of ideal health. Epilepsy, it seemed, had simply chosen him. It was a mystery without answers.
After enduring more than a year of debilitating grand mal seizures, CBD oil was introduced into Jordan’s treatment regimen. It was a pivotal moment, one that brought us to the hospital on June 1, 2022, but also marked the beginning of a new chapter. Since that day, he hasn’t experienced another seizure. Over a year has passed, and Jordan is thriving. His young, resilient brain has been catching up, and he is now on the path to wellness.
Slowly but surely, he has been weaning him off his medications, and now only takes one. Our lives have returned to some normalcy, but the shadow of fear always looms in the background. We have learned to cherish each moment, to celebrate every achievement, and to hold onto hope, for in the face of uncertainty, we’ve witnessed the remarkable strength and resilience of our son, Jordan.
Now, at the age of five, Jordan has faced the challenges of epilepsy head-on, and he has shown us the remarkable strength of a child’s spirit. I want to share our story, not as a tale of sadness or despair, but as a celebration of the courage, determination, and love that have defined our journey. It is a testament to the bond between a mother and her child, the unwavering support of family and friends, and the hope that, even in the face of uncertainty, life can be beautiful and full of joy.
Stories like the one you see above highlight the crucialness of why donations are so important.
Your generous contribution will provide much-needed funding for research, education, awareness, advocacy, and client support, with the goal of increasing the quality of life for people of all ages who are living with epilepsy every day of their lives.
As a parent, I know firsthand the challenges that come with raising a child who battles epilepsy. It’s a journey filled with uncertainty, but it’s also a journey filled with hope, resilience, and unwavering love.
Every month, we’re given the opportunity to make a difference, not only in the lives of our own children, but in the lives of countless others who face the same uphill battle. By becoming a monthly donor to Epilepsy South Central Ontario, you’re joining a community of caring individuals who understand the importance of support, services, and advocacy for those living with epilepsy.
Your consistent contribution allows us to fund critical programs and services, providing hope, social connections, and mental health support for people living with epilepsy in our community. It also enables us to offer vital resources and wraparound support for families and caregivers navigating the challenges of epilepsy, ensuring no one ever feels alone on this journey.
But most importantly, your generosity shines a light on a brighter, more inclusive future for all people living with epilepsy. Together, we can break down barriers, dispel stigmas, and champion a world where every person can thrive, regardless of their condition.
Join me today in making a lasting impact. Your monthly gift of $10, $25, or more, brings us one step closer to a world where epilepsy no longer defines our lives.
After years of thinking we didn’t want children, life changed and we began the journey of finally starting a family. I gave birth to a beautiful (and BIG) healthy baby girl in August 2018. She was finally here, and everything was perfect.
Piper
In January of 2020 the whole family came down with the flu and Piper had her first febrile seizure at 17 months old. Being in healthcare myself, I was well aware that children can commonly have seizures when fighting a high fever and ER assured us it was common and nothing to be concerned about. We were sent home with the knowledge that this may or may not ever happen again. Nothing happened, no more seizures with or without illness or fever… until her 3rd birthday. This is when things get interesting.
Piper crashed her own birthday party with a trip to McMaster Children’s Hospital and 2 seizures in one day. No fever this time, which resulted in a non-urgent referral to a Pediatric neurologist and EEG. Over the next few weeks & months, Piper had multiple seizures that progressively became more frequent and longer.
By October 2021 she was seen by Neurology and diagnosed with epilepsy. Our lives have forever been changed. Further investigation revealed a genetic cause, with a defect in the SCN1A gene commonly associated with Dravet Syndrome. Those first few months after her diagnosis were filled with fear, anxiety and many, many tears. She began anti-seizure medication, transitioned to a new daycare and somehow became seizure free for 7 glorious months. Since then her seizures have picked back up, occurring monthly on average, despite multiple medications with increasing dosages.
Piper has officially been diagnosed with GEFS+ (Genetic Epilepsy with Febrile Seizures +), which is found on the milder end of the SCN1A spectrum (much like how autism has a wide spectrum of severity). Her seizures are often prolonged (20-90 minutes), requiring an intranasal medication to be administered as soon as the seizure starts. Although she is of normal intelligence, we still encounter challenges and obstacles on a daily basis. Imagine your typical kindergartener being told to take 3 daily medications twice a day, medication side effects, frequent blood work to check medication levels, sedated MRI’s and outpatient EEG’s. She has undergone so much more than any child her age should have to, yet she wakes up each morning ready to conquer the world. Piper has taught us to live each day as it comes, to always be prepared and to live life to its fullest. I try to no longer let epilepsy rule my life, but instead understand that it will be with us everywhere we go.
I’ve been incredibly thankful to have met an outstanding group of women and mothers in the epilepsy/SCN1A community who have guided and supported me over the past 2 years since our diagnosis. Without a support system like them, along with organizations such as Epilepsy South Central Ontario, I don’t know how I would have gotten through the tougher times. We have had to educate teachers, instructors, coaches, child care providers, etc. on how to recognize, respond to and treat a seizure – a task that most certainly didn’t sign up for!
We’ve been met with nothing but compassion and understanding from everyone in our lives. We hope that Piper’s story can offer hope and raise awareness. She is now a VERY happy child who participates in dance, swim lessons and is a proud SK student who is currently working on improving her listening ears. Our future looks very different from how I could have ever imagined it would be, but we will continue to fight and are proud to be part of the strong and powerful epilepsy community!
Stories like the one you see above highlight the crucialness of why donations are so important.
Your generous contribution will provide much-needed funding for research, education, awareness, advocacy, and client support, with the goal of increasing the quality of life for people of all ages who are living with epilepsy every day of their lives.
