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

Beyond IS #3: What a ride

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

Beyond IS #2: Helpless

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