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Co-Founder's Message

I remember when epilepsy entered our family.  Erin called and said Emmett fell over while playing, sat up and started playing again.  She said he didn’t even know that he just fell over.  What was that…we both thought.  A few weeks passed and Emmett experienced his first of hundreds of tonic-clonic seizures.

It was summer 2006 and one day led into the next.  When I spoke with my brother Pat about Emmett, he explained the treatment course.  Medicines would be introduced slowly and they had to wait and see if they worked.   Emmett tried one medication after another only to find that unfortunately for Emmett, his type of epilepsy is resistant to drug therapy.

We were living a nightmare.  Emmett was one of several young children in our large family and now he wasn’t the Emmett we knew.  We all changed.  We were very confused…what is epilepsy?  What can we do?  How is this going to play out?  When will it end?  Our world stopped, our hearts were heavy, our sadness was constant.

We prayed, we begged for mercy, we cried, we wanted to turn back the clock and stay there.  We were in complete shock of how our lives were shaken to the core from epilepsy.

There are millions of people suffering like Emmett.  I couldn’t believe how terrible it was to have epilepsy and how little we all knew about this very serious medical condition.

Epilepsy was not welcome in our family, but it wouldn’t leave.  What’s that saying…keep your friends close and your enemies closer.  I can say for certain that epilepsy has called my name.  There is too much unknown and I want to learn more.  I want everyone to know about epilepsy.  I want people to feel comfortable to tell others that they have epilepsy and there be no judgment in it.  Epilepsy is not socially acceptable yet it can touch any family, randomly.  It is one of the oldest medical conditions, even documented in the Bible, and still I didn’t know what to do if I witnessed a seizure.

The way we suffered while watching Emmett suffer, we can never forget.  Our passion is real, our eyes are open and we are willing to change the face of epilepsy.  Journey with us on this most worthy cause.

As my father always said, Lord, walk with me and talk with me.

Anne Marie Clancy
anne@epilepsyoutreach.org

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Inspired by Sonny Rainshine