About the Journey...
I have lived with Cerebral Palsy (CP) my entire life. Those two initials do not define me. Yet the diagnosis they represent has unquestionably shaped how I move through the world.
Simply, my disability resulted from a brain injury sustained during premature birth at 28 weeks. This injury damaged the motor cortex of the brain, causing the muscles in my legs to receive too many signals to constantly "tighten up" in response to movement. Over time, this relentless tightness - known as spasticity - forced my affected muscles to progressively shorten and tighten. As a consequence of spasticity, I experienced significant delays with independent walking, increasing pain as well as frequent and dangerous falls. As I grew over time, spasticity also set the stage for the development of joint deformities in my legs, too.
By the time I reached my mid 20's, I was met with the unavoidable reality of spastic Cerebral Palsy in adulthood: a steady, disheartening decline in mobility even though I was young.
Despite these challenges, CP has not held me back from seeking higher education, working in a variety of sectors or chasing my goals. It has simply made me more determined to fight for and maintain the independence that walking provides. My ability to walk -- that I gained at the age of 8 -- has never just been about movement to me...it's a a gift I cherish, which represents joy and long-term freedom, too!
Discovering SDR surgery in March 2016 purely by chance, will forever be my turning point in this story. As I learned that SDR could permanently remove spasticity and prevent further deterioration caused by this type of CP - I was intrigued to say the least. My curiosity soon tuned into an extensive year-long research project. This would ultimately connect me with hundreds of families and adults from around the world, who had all successfully undergone SDR with renowned surgeon Dr. TS Park in St. Louis, Missouri (USA) over the last 35 years.
Their resounding feedback matched the research I had done. It became undeniably clear this surgery could be the key to preserving my ability to walk! It could also permanently relieve my spasticity-related pain and ensure my independence and quality of life for the future. (And if that wasn't wonderful enough, SDR could make it possible for me to experience so many joys for the first time - learning to be active in ways I'd only ever dreamed of - which was beyond exciting for this Canadian girl who has grown up loving the outdoors!)
Armed with the knowledge that I needed - and a sense of absolute certainty in my heart that this was my next best step - I submitted my application to Dr. Park's team and was approved as as a candidate in July 2017. From that point forward, my friends, family and I endeavoured to fundraise to cover the costs associated with SDR through our initiative, Walk with Wish. After 14 busy months, our efforts were successful.
At long last, my dream of SDR surgery was realized on March 22nd, 2019 and after 5 weeks of recovery and rehab in St. Louis, I returned home to begin experiencing the start of life spasticity-free! It's been a surreal, sometimes impossibly beautiful journey to describe thus far - and one full of a lot of hard work as I devote the next 2 years to daily physiotherapy in order to maximize the benefit of this life-changing surgery.
On October 25th, 2019, I returned to St. Louis for phase two of the process: hamstring muscle & tendon lengthening with Dr. Matthew Dobbs -- to correct some of the structural damage done from years of spasticity. As 2019 drew to a close, I found myself starting from scratch, learning to walk all over again...for the third time!
Daunting? Yes. Worth it, though? Absolutely!
I will be forever grateful for the kindness and generosity of the hundreds of people who came together from around the world to make my shot at SDR possible. Walk with Wish is a testament to the collective power of hope, community, and perseverance in making dreams come true - if you're willing to put in the work to make them happen!
I am choosing to share my story with CP...and my journey to and through SDR... so that it may help others who are also traveling this same path. Aging with Cerebral Palsy spasticity can be a frustrating, often isolating experience fraught with roadblocks and dead ends. But for those who are candidates for this surgery, your story doesn't have to unfold this way! Discovering SDR gave me my spark back, allowing me to work once more for that brighter, more mobile, and fully independent future that I seek. So if my experience might help light the way forward for others facing similar circumstances, this would be my greatest joy.
Thank you for stopping by and for reading this far. Feel free to reach out with kind questions if you're curious....or, if I can help you along in the journey, somehow.
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"You know how every once in a while you do something and the little voice inside says, "There. That's it. That's why you're here."...and you get a warm glow in your heart because you know it's true? Do more of that."
-Jacob Nordby
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Behind the Nickname "Wish"
The word "Wish" has always held a special meaning in my life. I asked my Mom to explain the story behind this one afternoon, and this is the entry that she wrote:
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"The greatest wish you could ever wish, is the wish that you wish for someone else." - Author Unknown
"You have always faced adversity with an unstoppable gritty determination to succeed. I witnessed this from the day you were born 3 months early, tiny enough to fit into the palm of your Dad's hand. You were 18 months old when we were told that you had CP, causing stiff muscles in your legs.
One day at not quite three years old, your Dad and I watched you - your tiny hand reaching up on the coffee table in our living room. You struggled to pull yourself up onto your knees, succeeded and then stood up, happy to join in with your sister to colour and play. As you stood there, a smile spread across your little face and you softly uttered the sounds "wiss wiss wiss." We both thought that you were saying, "wish, wish, wish." In that moment as you "stuck" your standing and wobbled forward with a tiny step, we knew that the little girl who doctors said would never walk was on her way... forever nick-named Wish."
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In the years that followed, there were many other "struggles and standings" along the way to help me gain my independence. Necessary orthopedic surgeries were pursued when I was just 4 years old, in order to give me a chance to one day do the "impossible" - walk.
Soon the word "Wish" became more than part of my identity. It developed into a phrase often said with love and encouragement by family and friends in our tiny Muskoka community of Utterson. They would often say, "We wish that Wish would walk!"
Eventually, after endless physiotherapy sessions, specialist appointments in Toronto and a lot of ingenuity from my parents, teachers and therapists - their collective wish for me had come true. I took my first independent steps at age of 8 and have cherished every single one of them since.
Movement - however it looks - is the greatest gift and I'll never, ever take it for granted.