My Story
I endeavor to be as transparent as possible about my journey, and know just how isolating epilepsy can be. I aim to create a space of understanding, acceptance, and support to others.
In October of 2016..
our daughter E, the last of five, was diagnosed with Tuberous Sclerosis Complex (TSC) which is the leading genetic cause of epilepsy after she had her first seizure at 7 weeks old. Life as we knew it had changed forever. We spent countless hours learning about TSC, epilepsy, anti-seizure medications, and children's hospitals. There were so many new parts to our lives and so much worry. With all the doctors appointments and hospital stays came along with it the electroencephalogram (EEG) tests. One day during a 3 day video EEG hospital stay, I mention how her hair was like rainbow princess hair. That got me thinking! How can I make the medical material that covers all the wires LOOK more like princess hair, or anything fun for that matter! Since then, I have been on a mission to bring this passion project to life. In doing so we have found a way to bring a little light to our situation by offering her choices on coverings during a test that she can't avoid. Now we want that for ALL epilepsy warriors everywhere.
Blog posts
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Pain into Purpose
I’ve been a bit MIA as of lately. Couple things for all you warrior families out there… listen to your body. I thought that I was managing my stress well,...
Pain into Purpose
I’ve been a bit MIA as of lately. Couple things for all you warrior families out there… listen to your body. I thought that I was managing my stress well,...
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Planning for the unexpected.
The one constant with epilepsy, at least for us, is that things are always changing. I know that not all with epilepsy have as much change as often as we...
Planning for the unexpected.
The one constant with epilepsy, at least for us, is that things are always changing. I know that not all with epilepsy have as much change as often as we...
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Finding Special Time
With Summer quickly coming to an end it really makes me see just how many things we planned on doing that we didn't get a chance to. When you have...
Finding Special Time
With Summer quickly coming to an end it really makes me see just how many things we planned on doing that we didn't get a chance to. When you have...