A few days ago we posted a picture of a group of Spinners coming together to raise awareness for epilepsy.

But, that’s not the ride I’m referring to. Six years ago we opened up our world to the Epilepsy and Infantile Spasms community as we turned our private journey of IS into a grassroots initiative. Named after our daughter Emma, we launched Emma IS.

The name merges her name and the acronym of IS but it’s so much more. It’s the concept that Emma IS who Emma is. There is no benchmark or measurement that we hold her to. She is the energy and inspiration behind our ride.

We started just trying to share information about IS and how critical an early diagnosis is. Trying to build a place where families can ask questions or find resources. We didn’t have that and wanted to do whatever we could to help others. That led to a collaboration with SickKids for research funding and have some amazing work being done there, and collectively with other hospitals in Canada.

Then, realizing that we need to get more people taking about epilepsy, we delegated to the TCDSB Board of Trustees to have Purple Day recognized and celebrated in all schools every year. We need to continue to break the stigma surrounding epilepsy.

What happened next was something that never crossed our minds. Sitting in the Ontario legislature hearing Motion 68 pass was, and still is, a surreal moment. Ensuring a safe learning environment for every child was monumental. This was followed with a tour of media engagements enabling us to share this news across various communities across the province.

At the end of last year, we were nominated to the Infantile Spasms Action Network (ISAN) – a group of 30+ international organizations dedicated to raising awareness of infantile spasms.
Together We Can Stop IS!

What’s next? We don’t know. It’s a road that we travel daily and manage the obstacles when they arrive.
But on March 26, this year, and every year, we celebrate Purple Day.
 
​ - Daniel

Looking back to when this journey started, I never knew how the path would play out. I knew a little about epilepsy, but nowhere near what I know today. And I’m still learning. New medications. New treatment options. All with one goal - seizure control - a term that seems like a far fetched dream right now.

Once Emma’s Infantile Spasms were under control, we always were told that epilepsy was a possibility, but never did I think it would play out like this.

If it’s been an option for Emma, we tried it. We haven’t hesitated.

Countless medications in an effort to get that right balance - can’t even remember all the names or dosages. The ketogenic diet. Not the weight loss fad that sounds enjoyable - the medically monitored strictly enforced one. I don’t think I’d be able to follow it as an adult, not sure how Emma managed it for 9 months. CBD. Tried it a few times. Again. No success.

Then there was surgery. Never did I think surgery was an option for epilepsy. But it is and has been. Before the age of 10, Emma’s had three. 2 for her VNS Therapy (implant and then a battery replacement) and brain surgery.

So now, just over two weeks post surgery, and she’s still an enigma.

Have you ever looked into your child’s eyes and felt helpless, truly helpless? Knowing that any wish you have for an end is just that, a wish. That the thought of a prayer is pointless because it won’t change the situation. All you have left is hope. Hoping that the reset button is pressed tomorrow so that some sense of normalcy can return. Times where the tears are backed up and knowing that if and when they come out won’t change the outcome, but might just elevate your kid’s anxiety.

​While the path always changes, there are moments where I feel like we are walking in a circle.

​Yet, I would walk that circle every day of my life with our little warrior.

​- Daniel