Today is March 26th.
More importantly, it’s Purple Day or Epilepsy Awareness Day.
I have to be honest with you. I didn’t mark the occasion or even acknowledge it was a thing until is was our reality. Some of you have heard our story, so this will provide an update for you on our journey. For others, hopefully we can raise some awareness.
September 15th, 2009 my first child was born. He was a healthy baby boy! He was already raising his head at 9 weeks old. He was eating well, walking early and passing out hugs to anyone that would accept. He was generally a happy little man with the whole world ahead of him to conquer!
Then he turned 18 months old. That’s when everything changed. Braeden starting showing signs, for lack of a better explanation, of twitching. His little shoulders would thrust forward every now and then. It got to the point where his little body would “twitch” forward. I made an appointment with the family doctor and he saw B and told us he was growing quickly and that it was likely just muscle spasms.
His “muscle spasms” grew worse to the point where one afternoon he was thrown forward into our kitchen island. He suffered a significant gash to his upper eyelid in the process. This was the same day I forced my way into the doctors office just in time for the doctor to see Braeden have a so called “muscle spasm”. B was sent immediately to the hospital to see a specialist … for seizures. This is the day our world changed forever. Months of different medications, different doctors, different hospitals … led us to a 4 week stay at McMaster hospital in Hamilton. That’s where we found out Braeden suffered from 5 different types of seizures and that his condition was consistent with Lennox-Gastaut Syndrome. An EEG revealed Braeden was seizing 99.9% of the day. In fact, he only had 33 seconds in a 24-hour clock where he wasn’t having an episode.
Our happy little man was becoming less engaged, less focused and more and more frustrated. Medication wasn’t working, until our neurologist in Hamilton tried something outside of the box. She reached out to colleagues across the world and opted to try a med commonly used to treat malaria. It was a miracle drug! It finally had a small impact on his atonic seizures. Braeden had been forced to wear a hockey helmut every where we went because of this type of seizure. It would force his body to the ground in one quick jarring movement. It resulted in numerous injuries and several lasting scars. A further combination of drugs failed and we were forced to try the ketogenic diet. Which, in turn, also proved unsuccessful.
At the end of our rope and out of options, we contacted the head of neurology at Sick Kids Hospital in Toronto. When the doctor heard our story he requested to see us right away. Within minutes of our arrival he told us what needed to be done. He said surgery was our only option. This was shocking since we were told that would never be an option. Braeden wasn’t like the woman in the “burnt toast commercial”. His little head was experiencing fireworks instead of just one area where it was easy to pinpoint where the seizures were coming from.
The surgery the doctor was referring to was VNS – Vagus Nerve Stimulation. It was a device that could possibly break the seizure pattern and give him a small sense of calm. I was terrified to have my son opened up and altered in any way but it was his only hope. If we could eliminate some of the seizures, it would be worth it.
A few months later, Braeden woke up in recovery and suffered two seizures back to back. After telling the doctor he didn’t know what he was doing and sharing a few other thoughts …. he told us take Braeden home the next day and let his body adjust. We got home that next day and put B to bed that night. Around 12 in the morning I was woken up by the sound of a little voice calling mommy for help. I ran to check on Michael (my younger son) and found him sound asleep. I went into check Braeden and found him sitting in his bed holding his chest. He asked me why the doctor hurt him. Over the course of those 4 years, B had stopped communicating and was falling into more and more silence. After I wiped away the many tears, I ran over to my little man and hugged him so tight. My little B was back! He was in there the whole time and this doctor found him and brought him back to us. He gave him his life back! Even he can’t explain why this device worked the way it did but we’ll take it!
Fast forward to 2019 … Braeden is wearing a hockey helmut but only when he takes to the ice to play hockey! We were told he would never play sports in the same capacity as his younger brother. He’s already got 2 seasons of baseball under his belt as well! B’s neurologist has upgraded his situation from dependent to independent. He’s expected lead a “normal life” and excel in anything he puts his mind to! In just a few short weeks, we are cautiously optimistic, that we will hit the 3 year mark. 3 years seizure free. Words we never imagined we’d ever hear.
Please, wear purple and show your support for everyone suffering from Epilepsy. They need you to believe that anything is possible.
I do indeed love someone with epilepsy.
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