Sometimes when you’re really lucky - you get to meet one of your heroes in real life. Someone special whose story touches your heart and who inspires you to keep working on your lofty goals. And sometimes, that hero just happens to come in the form of a sweet, spirited four year old little girl named “Evie”.
Rewinding for a moment, I first "met" Evie’s Mom back on October 1st, 2017. The date sticks out clearly in my mind because it was the same day I began my fundraising journey to get to St. Louis. I had received a Facebook message from a mother in Ontario whose daughter had Cerebral Palsy (CP) and who had just been accepted for SDR surgery with Dr. Park. She was looking to connect with adults a bit further along in life with CP - to know what the aging process was really like with spasticity. I happily exchanged a number of messages with Mel that night and we kept in touch in the days that followed.
October 1st was a pivotal day for me - my journey to St. Louis had finally begun. And from day one, it had also now taken on the meaning that I’d always hoped it could.
You see, early on, I knew in my heart that I wanted my road to SDR to be about so much more than just the dollars we hoped to raise. I wanted to use my story as an adult with CP, for a greater good. I wanted to help parents of young children with CP to understand what the future might hold. I wanted them to have knowledge at their fingertips that could only come from lived experience - which my family didn’t have access to 30 years ago. I wanted their children to avoid the CP struggles that I had been blindsided by as a young adult - because even today, the vast majority of doctors here in Ontario still won’t acknowledge the progressive deterioration caused by spasticity.
Most important, I hoped to use my story to help others learn about SDR surgery and the difference it makes, because I knew how significantly my own world had shifted on the day that I discovered it - and I wanted others to know the power of that hope, too!
It wasn’t long before I formed a connection with Mel - that I cherish to this day. She helped me find my footing in those early days of fundraising. And she always allowed me the space in our chats to just be real about the challenges of CP that I was living. Soon, she too embarked on her family’s St. Louis fundraising mission, and my heart leapt with joy that Evie would be blessed to get this surgery that would change her life - well before spasticity could run its course.
As fate would have it, I met Mel and her husband Brian in person just a few weeks later, when Mike Poole came to Ajax for a meet-and-greet during his first Canadian intensive program.
As we talked that night, I learned more about the hope that they now had, and I reiterated my convictions that this would be the greatest gift they could ever provide for Evie. It warmed my heart that I could play a small part in her journey, even just by reassuring her parents that their choice was the right one. I walked away from that night knowing fully that Evie’s future would be bright. And on the drive home, I couldn’t help but smile at the serendipity of it all.
Over the winter, we cheered each other on with each fundraising hurdle we both overcame. I was so thankful to have someone to walk this crazy road with, who understood the intensity and the magic of it all. Evie cheered me on too, and she was never far from my mind as I began to connect with more families who reached out to ask the same questions her Mom once had.
As Mel and Brian’s fundraising campaign gained momentum, it was clear that Evie would get to have her surgery much sooner than expected! So as their departure to St. Louis in March drew near, the butterflies in my stomach grew. For some, it might seem strange that I felt such a strong connection to a little girl that I had not yet met - but I did. I was relieved for her and so excited about the future she would live, spasticity-free!
Once in St. Louis, Mel was thoughtful and gracious enough to keep me in the loop of what was happening in the lead up to Evie’s big day with Dr. Park. She explained the pre-op process and gave me valuable insight into the hotels, shops and amenities near the hospitals that provide SDR care. She also confirmed that Dr. Park was just as wonderful in person as others had said - and that yes - the team under his direction was truly world-class. This put my mind at ease not only for Evie, but also for when my own time comes to walk those same hospital halls in 2019!
She snapped this photo to send to me during one of their walks around the city - and when I saw it, I got a serious case of goosebumps! They were out front of Barnes Jewish Hospital - where adults receive their SDR surgery - and said in the future, she hoped that I would be standing where they were now. I hoped with all of my heart that I would be, too.
Evie sailed through her surgery and when I learned from Mel that all went exactly as expected, there were no words to explain the happiness I felt. From here forward, spasticity would no longer hold Evie back or rob her of her independence in the not-so-distant future. She was free, and I grinned from ear-to- ear knowing just how life-changing this day would always be for her.
Which brings me back to just a few weeks ago, when I had the joy of meeting this determined little one who has unknowingly given such meaning to my own journey. Once again, the return of Mike Poole to Scarborough for his 2nd Canadian intensive brought Mel and I together for a visit (why break tradition, after all?! ) And this time, Evie came too!
At just 6 weeks out from her surgery, the difference was obvious. Decked out in pink, she hopped and twirled and moved about with a newly-found ease that was beautiful to see. I got to give her one of the bracelets we’ve made to help me on my way to St. Louis and when I placed it on her tiny wrist, I couldn’t help but tear up, grateful that we had connected through SDR.
We talked a bit more about Evie’s big adventure to get to Dr. Park and about the work that lies ahead of her family over the next year as she works hard to build strength in her muscles that are no longer restricted. It’s a long road to reap the full benefits from this surgery - but she is well on her way. And I can’t wait to see where she goes from here!
Tonight, Mel and Brian are getting set to host a dance in celebration of all that they and their community of supporters achieved, to make SDR happen for Evie. My happiest congratulations goes out to them because what they’ve done is wonderful and courageous and life-changing... and so, so worthy of a proper party!!
I’ve been told that my little hero plans to bust a move out on that dance floor tonight - and I have no doubt that she will - because now, she CAN!
You can bet that I will be dancing like crazy with her, in spirit! Come a future party though when we've both got our post-SDR dancing legs on? Look out! :D