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What “Purple Day” Means To Me

What “Purple Day” Means To Me

This international day of Epilepsy awareness was started by a nine year old girl, Cassidy Megan, in 2008.

As a catalyst to encourage dialogue about the disorder, and to spread hope to others, this movement began and has vastly spread worldwide.

When my daughter, Ryleigh, was ten months old, I witnessed the first of many gut-wrenching seizures.

You NEVER forget the first time you experience the heartbreaking glimpse into the face of this disorder.

Life is forever changed.

Nothing is ever the same again, and the constant fear and worry of it happening again, at any moment, is always there nagging at you.

As many times as I’ve watched helplessly as she endures seizures, the experience never truly gets easier.

Over the past seven years, I’ve learned to act quickly, roll her to her side, watch her closely, time the event, and administer oxygen….all while time stands still.

I typically don’t fall apart anymore now until after it’s all over… until I’m holding her safely in my arms…until her body is still and she’s taking normal breaths again.

Parents shouldn’t have to live in fear of losing a child to Epilepsy.

Individuals with Epilepsy shouldn’t have to rely on harsh medications that often have detrimental side effects on their minds and bodies.

As parents fed up with the side effects of our daughter’s anti-epileptic medication, my husband and I have diligently and desperately sought other ways.

At a crossroads of being maxed out on her seizure medicine and the recommendation of adding a second one, we knew something had to change.

We were seeing horrible side effects, all the while, she was still having seizures.

Thus, we began the discussion of Cannabidiol oil (CBD) with our Neurologist for our daughter.

This discussion of treatment options needs to spread worldwide.

After one year of being on CBD oil, and having her seizure medication slowly weaned down to a much more tolerable dosage, our family has HOPE.

We’ve seen a “brain fog” lifted, cognition dramatically increased, anxiety melted away, and the frequency of her seizures lowered.

There is so much more research needed; there is so much work to be done.

Laws need to be changed so that every epileptic patient has access to safer, natural medication.

Lives need to be saved; quality of life needs to be improved.

Why does the world need Epilepsy Awareness?

So that the world can understand the effects that this menacing disorder has on individuals and their families.

Why do we wear purple on March 26, and urge others to do so as well?

To stand together in SUPPORT of those worldwide who are affected.

Join me on March 26 by wearing purple for PURPLE DAY. Let’s keep the discussion going about Epilepsy and continue to raise awareness together.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Jodi Shenal

Meet Our Blogger

I'm a stay-at-home mom with two amazing children. My son is on the Autism spectrum and my daughter has a rare genetic disorder and multiple disabilities. I am passionate about advocating for my children, writing about our experiences, and raising awareness for other families in our shoes. Our family lives for the little things and we've learned to appreciate all the beauty that surrounds us

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