Mason was diagnosed with a rare brain condition called Chiari Malformation in 2017 when he was 5 years old.
Chiari Malformation is a problem in which a part of the brain (the cerebellum) at the back of the skull bulges through a normal opening in the skull where it joins the spinal canal. This puts pressure on parts of the brain and spinal cord, and can cause mild to severe symptoms. In most cases, the problem is present at birth (congenital). Research shows that CM occurs in about one in 1,000 births, and is characterized as structural defects in the skull, brain and spinal cord. However, CM can also be diagnosed later in life if a traumatic injury, disease or infection causes spinal fluid to drain into the spinal canal.
The most common symptoms consist of but are not limited to neck pain, fine motor impairments, balance impairments, numbness in the hands and feet, and dizziness.
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 9 years old, I will be 10 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 determine 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/Neuro surgery. 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. 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 4 years ago. We are now well underway in planning our 4th 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 as well brings our community together to support a truly amazing Hospital. There is an online link that people who are unable to attend the the event can make an online donation and still be able to support our event.
Thank you for all of your support,