Colson’s Story

Colson was diagnosed with Epilepsy November 2022, shortly before his first birthday. Given that Colson suffers from frontal lobe brain damage, we weren’t surprised but still devastated for him because it’s another hurdle he had to overcome in his short life. Despite the diagnosis, we felt comfort in knowing that there are supports for families in Canada.

Colson’s constant happy personality and vibrant smile helps heal the trauma our family faced when Colson was diagnosed with Bacterial Meningitis at 2 weeks old. The infection cut off oxygen to parts of his brain and left scaring on his frontal lobe. After 9 weeks of tough antibiotics and hospital stay, Colson was cured from the infection. From the time we got admitted to McMaster Children’s Hospital, his neurosurgeon told us Colson would likely suffer from epilepsy, at any point in his life. We were told to monitor for seizures, which could occur while he’s driving, sleeping or at college.

While enjoying the fall weather and watching Colson progress and develop beyond what the doctor’s expected, Colson started to have seizures, we didn’t even know until we were visiting family in North Bay. I noticed he would tilt his head and blank stare, but I could not tell if this was because he was tired. I reached out to his pediatrician but did not receive a response.

We went to North Bay around Halloween and while sitting in his highchair, Colson stopped responding to his name and his shoulder was shaking uncontrollably. This happened for about 5 minutes and because we were in a isolated town South of North Bay, we jumped into the car and took him to the hospital and later, after getting referred to his home hospital, they diagnosed him after his EEG.

Because meningitis is the cause of the epilepsy, we were told his seizures would be hard to control, could escalate, or he could even out grow them. He is stable on medication but does have episodes when he is tired or sick. He takes medication twice a day and his dosing will change with age.

I wanted to know as much about pediatric epilepsy as I could, including obtaining a medical bracelet for Colson. I found Epilepsy.ca and started following their social media. Our family didn’t feel alone through it anymore and I plan to tell Colson about all the resources he can access when he gets older.

A cure for epilepsy would mean Colson could continue to thrive and enjoy life without the reminder that he is different and needs to adjust his activities around his diagnosis. We as his parents could find comfort when he starts school, learns to drive, and goes to college, without a cure these are things we worry about.

Spreading awareness about epilepsy and knocking down misconceptions is important to us.


The courage of those living with epilepsy,

inspires us and fuels our journey.

 

Your gift will help us to continue on the road toward an epilepsy cure.

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Kassidy’s Story

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Adel & Manel’s Story