Beyond IS #4: Decade of IS

Some decades can just fly by and you lose track of what actually happened, not even believing that ten years have passed. Other times, it can feel like an eternity.

To begin - apologies on our behalf for not being as active on our social channels the last few months as we have been. While we continue to navigate our organizational goals, living through Emma’s epilepsy took a toll.

Mentally and physically.

Emma’s doing OK - we continue on this circular journey of new medications and challenges to make sure she is living the best possible life. It’s hard to pinpoint what works vs what doesn’t, but we’ll always explore options as they are presented.

This weekend, many reflect on what, or who, they are thankful for. Passing on gratitude to others that have had some impact on their life. That holds true for us as well. We are beyond thankful for all of your support through the years. It has helped us, and others as, we share our journey. We are always thankful to our medical teams. They continue to push and try to find the next best thing for Emma. She continues to be an enigma, but they continue to search for answers.

Infantile Spasms entered our vocabulary ten years ago. It’s a moment in time that we can recall like it was yesterday. Since then, there have been many life moments that have almost shifted into the almost forgotten state, but news of the diagnosis will forever be etched in our memories, and have helped mold who we are today.

While it’s impossible to never look back, we continue to look ahead and peer down that road of uncertainty, not knowing if we are truly ever ready for what’s to come. When that fork approaches, we’ll be ready for it. We have to be. Emma takes on everything that is thrown her way.

It hasn’t been fair. Not for Emma. Not ever.

We use that as a motivator.

We continue to advocate and are working towards making Motion 68 a reality in our schools. Our partnership with SickKids remains strong and we are working closely with the IS clinic to make life changing improvements for children with infantile spasms.

As we wrap up this weekend, thank you for your words, generosity and support.

Together, we can STOP IS.
​
- Daniel