I would like to take some time to introduce myself to everyone and share my journey. My name is Mason, close family and friends call me ‘Mase’. I am 13 years old, I will be 14 on April 30th. My journey has been eventful. My diagnosis of Chiari Malformation came as a complete shock.

From an infant, my parents and family knew something wasn’t right. I would continually cry, was extremely irritable, encountered many digestive issues and would scream in pain and discomfort for hours on end. This was a mystery to my parents. Especially my mom. She would take me to many doctor appointments to be sent home and told by doctors I was fine. She didn’t believe the doctors! She was persistent and would book another appointment and share my symptoms with yet another new doctor. She listened to the doctors' recommendations, trying everything they suggested. NOTHING worked!

She knew the only way to help me was to continue to share my symptoms with more doctors and specialists. I underwent many tests that were not necessary in the end, i.e. rectal biopsies, x-rays, ultrasounds, celiac testing, cystic fibrosis testing, and multiple blood work sessions. It seemed so surreal and was overwhelming. Life as we knew it was going to change.

There would be no more unnecessary testing, no more doctors poking or prodding, and no more moments feeling like we were losing our minds. It was the moment where the GI doctor decided to do the upper GI scope and determined my issues were not related to a GI condition. She then proceeded to refer me to a neurologist. This was when life truly changed. He instantly thought there was a need to order an MRI and he referred me to Sick Kids Neurology/Neurosurgery. As soon as I had the MRI, I had an answer along with a diagnosis. It was a diagnosis that frightened my family immensely, but it was a diagnosis. I was diagnosed with Chiari Malformation.

We had no idea what this was and how it would affect my life moving forward. I was almost 4 years old when I was diagnosed. I was a little boy who had to learn about the world of a condition that came with many struggles, pain, symptoms and has NO cure. It was now a world that involved my parents researching, new doctors who ran tests, scans and many visits to Sick Kids Hospital. It is now a constant struggle to manage pain.

Along with Chiari Malformation, I also live with neurogenic bladder, a condition that affects the way my bladder functions. It’s a part of my journey that adds extra challenges to my daily life. To help manage this, I have a Sacral Neuromodulation device (a special machine implanted in my body) that helps send signals to my bladder so I can function more comfortably and with more control. This condition, like Chiari, is ongoing and requires daily care and attention. But thanks to the amazing medical teams, support from my family, and the technology available, I’m able to navigate this part of my journey with hope and strength.

I could not be the boy I am today without all the love, support, and dedication of my family, friends and loved ones. My mother began researching ways of how to conquer my condition as soon as we received the diagnosis. She immediately found herself planning our 1st Chiari Awareness Walk in Bradford. It was truly amazing.

That was 7 years ago. We are now well underway in planning our 6th Annual Awareness Walk for Chiari in support of myself, Mason Donkin, and Sick Kids Hospital. The hope is that soon we will have enough money raised to open the first Canadian Chiari Research Center at Sick Kids Hospital. This will help myself and so many other Chiari warriors and their families. Spreading awareness and my story helps educate others about my condition and also brings our community together to support a truly amazing hospital.

Here is the online link for people who are unable to attend the event can use to make an online donation and still be able to support our event.