Katie's Story

Katie was the original inspiration behind Katie's Run, but she is not alone.

July 6, 2019 – Katie's Speech at the 8^th annual Katie's Run

Hi everyone, welcome to the 8^th annual Katie’s Run for Epilepsy. Before I say a few words I would first like to start off with some heartfelt thanks to everyone here. I would like to thank Anthony Farnell. Christine. Eplink and OBI. To our volunteers. To our sponsors. Donors. Fundraisers. Participants. Prize donors. And of course our organizers, Trudy and my wonderful mom, Geri. Without all of you none of this would be possible. I thank you from the bottom of my heart for all that you do.

I stand here today with more words on my heart than ever before, yet no words that could reach the meaning for what has taken place this past year. So I will be fairly brief. This past year, not even a month after last years' run, my sweet love, my soulmate and best friend of what was to be a life time, Levi, died in a horrific accident while working in Alberta. This shocking, monumental and life shattering loss has led me to our topic of this year. Because all I see and feel around me is the loss of Levi and I was reminded of the losses that epilepsy brings in our lives. Loss of control. Loss of jobs. Loss of licence. Loss of mobility. Loss of independence. Loss of future goals. Loss of opportunities. Loss of trips. Loss of confidence. Loss of Friends. Loss of Freedom. Loss of time. Loss of faith. Loss of loved ones. The list, it goes on and on. We have all experienced loss in some form, at some point in our lives and at different magnitudes.

It is a common denominator in a hope giving community where so much agony lies. And I don't want to disregard that pain and loss in spite of all the comfort, hope and healing we encourage and yearn for. Perhaps beginning to learn what we need in our time of great loss is one of the more important things that assists to endure day to day. What values bring comfort and what don't, making the loss just a little more bearable. Thus bringing us all back here, together again. Searching, hoping, hurting but eager to support. Ourselves. Each other. Because it hurts. Our losses. They hurt. So much.

So in honour. Of every single hurt and loss we have suffered. In honour of Levi, of all your loved ones you have lost. Lets keep doing this. Let's beat epilepsy. To ebb our pain and fight epilepsy. To one day uncover the brilliance that will END epilepsy once and for all. THANK YOU.

Katie

July 7, 2018 – Katie's Speech at the 7^th annual Katie's Run

Hi everyone, welcome to the 7^th annual Katie’s Run for Epilepsy and thank you all so very much for being here whether that be volunteering or as a participant. I also want to say a huge thanks to our sponsors, prize donors and special guests, Alex Kopacz and Anthony Farnell. For those of you who do not know me, I am Katie.

Now that we have come to 7 years of doing the run I look back and see how much we have progressed, pushed through and learned from throughout the years of doing this event. It makes me, without fail, overwhelmed with gratefulness and love for those who have made this possible, especially Trudy and my mom Geri. Together you have all truly made this event not only a yearly thing but also a family and a community 365 days of the year to support and love one another through the good and the bad. However, when it comes time do our run every year I am so often with a heavy heart, pushing myself each time to speak on my greatest heartache and having a nagging reminder of not only my own struggles but especially those of so many, TOO many others living with or have lost their lives to the Monster of Epilepsy.

This is why we do our run, to help uncover the brilliance that will one day weaken the Monster of Epilepsy enough that a cure will be found. Thus far our efforts have begun to weaken it and that feels good. But of course we must always push forward and do what we can.

Last year on August 18^th, after over five years of remaining seizure free, I had a grand-mal seizure and once again I was stared right in the face by the Monster of Epilepsy.

Epilepsy does not politely knock on one’s door, it barrels it down and leaves one to pick up the pieces.

I will not claim to truly know each of your personal stories, your journeys or your heartaches. I am so sorry for those of you that have had epilepsy barrel down your "door."

Truth is it takes time, time to heal, time to understand how to move forward, time to breathe. So give yourself time in these seasons. But please make sure to remember a few things as I know I so needed to: you are resilient, you are not alone, you are never alone, there is hope and healing within this circumstance, I promise you. Even when you do not feel it quite yet. It will be there.

Now I will just briefly read you a note I wrote down for myself just after I had my seizure in August: "This is a season. This is temporary. You are not alone, remember this please. Each inhale breathing through the pain, and exhale letting go a little bit of it at a time. Those voices in your head saying, 'you’re not strong enough,' they are wrong. You ARE resilient.”

Thank you so much,
Katie

June 24, 2017 – Katie's Speech at the 6^th annual Katie's Run

Thank you's to: OBI, newcomers and continued supporters, Trudy & Mom, thank you to all the dads that shared this year, volunteers and everyone in between! We love and appreciate you all so much.

Life changes so very quickly. One moment we are chugging along doing our mundane routines and then, boom! A surprise hits. Sometimes an absolutely amazing surprise like a loved one coming to visit from out of town or maybe a smaller gesture of surprise like flowers from someone you love.

There is also another type of surprise ... the ones I have tried to forget, the devastating kind, that moment in your life that takes your world and turns it completely upside down. Like waking up in an ambulance for the first time in and out of consciousness, or a father rushing to the hospital because his daughter is being airlifted.

Time and time again throughout my life, I keep looking back and reflecting on such moments like these. Sometimes finding myself in bliss or delight, feeling happy looking back on the good things. However, also reflecting on moments that have made me feel anguish and confusion and trying to figure out "why me?"

I have come to a sort of conclusion about these moments we are faced with in life (both good but mostly bad); they unequivocally and unexplainably are overflowing with the richest lessons. Hindsight is one of the greatest, trickiest and best gifts we have as human beings. If we don't use the opportunity to truly take time and reflect on our life's "highs and lows" if you will, how are we truly going to heal and breathe in our lessons properly?

Over the past year, my life hasn't been incredibly special. I've gone to school, studied, made mistakes, cried, hurt, laughed. Yes, I have struggled from time to time and maybe even people let me down here and there, but "that's life" as the saying goes.

It's not until things get really shaken up, then we listen, then our minds are stirred, our hearts are raw and our soul is centered. Why do we need this push? (That's my question for all of us today). Mine and my family's lives have been interrupted in these surprising moments by not only epilepsy but by death of family members, friends, other illness, and so on. But "that's life" right? I'm not special. I am not an extraordinary person by any means. I have merely been given an extraordinary gift. The gift you ask? Having less of these devastating interruptions in my life called seizures.

I'm sure everyone and anyone can relate to having their life pushed to a screeching halt because of a hardship that they couldn't bare ... seizures was mine.

That's why we push for this cause of ending my greatest personal hardship and the hardship of way too many, the monster of EPILEPSY. Let's cure this terrible thing!!

I have asked my father to speak today from his perspective on these devastating moments and hardships we experienced from epilepsy as a family ... please give a warm welcome to my awesome dad, Don :)

Thank you,
Katie

June 2016

Hi all! I am both absolutely thrilled and humbled to be doing our 5th annual Katie's Run! WOW! What a blessing!

For the past year I have been living in British Columbia, studying at Bible College. One thing I have noticed along the way in my journey with epilepsy is as I go from place to place and I get to know those around me and we eventually exchange the "deeper" common facts about one another, my ailment comes up. Although people are well-meaning, I have found that ignorance is truly bliss and each one of us needs to observe our own outward reactions and rebuttals before we could possibly leave a scar. You see, I believe each one of us has triggers, from our past experiences, all very different, flawed, and often so fragile. So, let's be acutely aware of everyone's "triggers" as you get to know them, that way we can protect each other's fragile and healing hearts instead of adding to the mess.

Can't wait to see everyone at the run! Thank you very much for all your support in our effort to end epilepsy!

With Love and Gratitude,

Katie

June 2015

Coming into the 4th Annual Katie's Run, I feel more humbled and blessed than ever.

I'm just over 3 years seizure free, and sometimes it's hard to believe as the memories are still fresh.

Most recently I finished a year at Redeemer University and experienced my first time away from the comforts of home. It came with challenges, but I was blessed with true independence along with moving out to British Columbia for the summer.

I'm most excited for Katie's Run this year. I'm not sure why, but as the event gains strength and I find healing I've discovered that this is truly so much greater than myself and just sharing my story.

I've met numerous people with epilepsy and heard multiple stories, both terrifying and inspiring. If there's one thing I know now it's that I want everyone to have hope & peace, to not feel like they are chasing an impossible dream.

May 2014

Wow, almost 2 years seizure free!!! If you had told me two years ago that I would be here, I wouldn't have believed it. I feel infinitely blessed!! I am actually driving now and am planning to go to Redeemer University in the Fall to take International Studies.

There are still worries and concerns. Not a day goes by where I don't think about having a seizure but I am taking each "seizure free" day as a gift.

I don't ever want to forget how blessed I am and where I am at compared to others. That is why I want to continue with Katie's Run, to help others who are worse off than me. We need to push forward towards a cure. That remains the ultimate goal. Thank you for continuing to support Katie's Run!

October 2012

Surprisingly my summer went by without any seizures! After 4 months of no seizures and a "normal" EEG the doctors have concluded that the combination of the medications I am taking must be working. This means I am holding off on the VNS surgery for now. I can see how things go in the future. I don't know what the future holds but for now I am enjoying having a break from seizures. The medication still has its side-effects and I am looking forward to a day without meds and without seizures. I am hopeful that the funds raised from the run will help in finding a more permanent solution for all of us with epilepsy.

June 2012

Since I have written my story quite a bit has happened. I spent a week in London University Hospital in the Epilepsy Monitoring Unit. There I was hooked up to an EEG machine for a week where they tried to trigger seizures by taking me off my medicine "Keppra" and were finally successful when I had a seizure in my hospital bed one night. This led to me finding out from the doctor that I have Generalized Epilepsy (which means that when I have a seizure it starts right away from my whole brain). This now means that my hopes of brain surgery are gone... But of course, in discussing other options with the doctor we came up with a possible solution... Before I left the hospital he put me on a higher dose of medicine I was already on and reacting well to "Topamax" along with another new medicine. In addition to this my doctor also suggested the Vagal Nerve Stimulator (VNS) AKA "the brain pacemaker" which he told us should work well along with the meds to help my seizures. I quickly told him to put me on the waiting list...

Now I am home, safe and sound, happy to be in my own bed, and especially happy to be with family and friends!

After spending the week in London I am even more determined now to raise awareness and funds for research. I have now met many others whose lives are drastically changed and restricted because of their seizures and I want to help them too. That is why Katie's Run is so important!

Katie's Original Story, April 2012

My name is Katie. I am 16 years old and I have epilepsy which is caused by abnormal electrical activity in the brain and causes seizures.

My life before epilepsy was basically what anyone would consider healthy and normal. I was a fun, social, carefree Christian girl living in Haliburton County, just having fun, not knowing what the Lord had planned for me. I was just starting to get settled into High School which I had been looking forward to for so long, I was working towards my black belt in Karate, on the field hockey team, hanging out with my friends as much as I could until December 21st, 2010. I had my first grand mal seizure in the car with my mom. We were coming from an ultrasound appointment as I had been experiencing some abdominal pain possibly looking for gallstones, the next thing I knew I woke up in an ambulance, thinking that I was dying since there was so much commotion around me and I felt so out of it. I didn't recognize anyone around me. I was very frightened.

For the next three months I did not have any more seizures and we thought that perhaps it was just a one-time thing. My life slowly continued as normal although my parents were very guarded of me. Then in March when I had two more seizures, I was then on a journey of not knowing what was happening to me and why, was it diabetes, was it a brain tumour? I ended up at the Children's Hospital in Ottawa and was tested and diagnosed with Epilepsy and put on a treatment plan. The general reaction to this diagnosis was that this was good news for me, all I needed to do was take some medication and I will be just fine, but that is not at all how it went.

The next several months were a blur of uncontrolled seizures (always grand-mal, and always without warning), increasing doses of medications, severe panic attacks, a whole host of side effects from the medication including fainting, confusion, and fatigue. This all led to several ambulance calls to my home and school and eventually I couldn't attend school anymore. Following one particularly severe panic attack at home, I was taken to the hospital by ambulance and at the hospital they began treating me with Ativan. My body was not reacting well to it. By now my body had been convulsing for hours and they kept increasing the dose to a level that put my life in danger. I had to be transferred by Air Ambulance to Ottawa. There my parents were told by the doctors they had no idea how my respiratory system had not shut down or that I was not in a coma. I came home broken. I had had a complete physical, mental and emotional breakdown. It took me many weeks to recover. At times I would enjoy weeks of not having seizures but then all of a sudden they would re-appear. Through much faith, counselling and love my panic attacks are no longer, but the seizures and the medication remain my greatest challenge. You see, seizures hurt. I don't feel them coming, but after when I wake up my head hurts a lot, along with my body aching, my tongue is bitten and I am extremely confused, sad and tired. It takes me days to recover from just one.

Fast forward to now, I have accepted that this is going to be a journey. There is no simple solution or quick fix. As I write this I am now on my way to London University Hospital where I will be admitted into the Epilepsy Monitoring Unit where they will attempt to trigger seizures to monitor and observe them. Through this I am hoping that they will offer a permanent solution like brain surgery.

Through this time I have come to realize that epilepsy is a field of medicine where there are so many unknowns. So much of it seems like guess work. There is much more research that needs to be done. Thank you for considering helping all of us whose lives are affected by seizures.

God Bless!

Katie
Haliburton, Ontario

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