Katie's Story More Stories

Katie's Story

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

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 Woudstra. 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 Woudstra
Haliburton, Ontario

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