Five years ago, my then eight year-old daughter was attending rehearsal for her 1^st Holy Communion at Sacred Heart Church.  My friend and I dropped our girls off and went shopping for the hour or so before we had to be back there.  I still piece together the accounts of that night and try to imagine what it must have been like.  About the time we were heading to the car to pick them up, she was sitting in a pew, laughing with her friends.  As I was sliding into my seat, she was beginning to slump down in hers.  While we were driving and talking, she lay on the floor of the church convulsing as her astonished friends looked on.  When I arrived, she was limp and heavy, lying on the pew.  She had no recollection of what had happened.  I had no idea how our lives were about to change course.

Whether you witness your child’s seizures or not, it is, at first, a devastating experience.  There are so many questions that float in and out of your mind.  Will she outgrow it?  Why did it happen?  Could I have prevented it?  What about her future?  The list goes on.  Add to that our total ignorance of seizures and epilepsy.  We were putty in the hands of anyone who claimed to know more than us.  Thankfully, we were in the hands of some pretty wonderful neurology staff at Children’s Hospital of Philadelphia.  We also met other helpful advocates along the way.  This has been a godsend on a journey that seems to be without end.

My daughter was placed on medication after she experienced a second seizure just two weeks later.  She spent a year never feeling quite right from side effects.  Finally, after testing, it was decided that she could be cautiously weaned off of the meds.

In the following, seizure-free / medication-free year and a half, our daughter thrived – swimming, playing tennis, having fun.  We forgot about epilepsy and moved on with our lives.  Until the migraines began, which were followed by another convulsive seizure.  In the following three months, we waited as a new medication was introduced and increased steadily as she experienced seizures of varying types and frequency.  This was our darkest hour.  Finally, everything stopped – the meds were working!

By this point, we had gotten involved with the annual Walk for Epilepsy in Washington, DC.  My best friend and I began raising money for the cause.  My older daughter and her husband worked with their snowmobile club in PA to hold an event they dubbed “Snowmobile 4 Epilepsy”.  It was so successful, they decided to start a nonprofit.  As a family, we brainstormed for a few months.  When our youngest had yet another convulsive seizure in school last May, we decided to move forward.  Last August, we incorporated 4Epilepsy, LLC.

4Epilepsy was born of our desire to improve the lives of children living with epilepsy.  We serve those with a primary diagnosis of epilepsy, living in southern NJ and eastern PA.  We want to give these children and their families an opportunity to focus on the positive things in life.  We have already implemented a program that puts medical ID bracelets on the wrists of children diagnosed with epilepsy.  This summer, we will be underwriting registrations for 10 children attending epilepsy camp.  Support 4 Epilepsy, our monthly support group will begin meeting in June.  As our organization grows, we hope to provide scholarships to encourage young adults with epilepsy to pursue higher education; financial contributions to offset ancillary expenses; incentives for participation in local community sports programs; and provide education and training programs for community groups.

Our journey with epilepsy is not over.  We were lulled into a false sense of security several times, only to be instantly jolted into reality.  For our daughter, outgrowing epilepsy is unlikely, so we no longer wait for that.  She has what they call “intractable” epilepsy – meaning that it is not totally controlled.  Things are good for now and she is on several medications that are effective.  I still don’t know the answers to most of those original questions and I have learned to live without them.    We no longer panic at the thought of another seizure.  That only comes from experience.  Talk about your School of Hard Knocks. 

Our story is the same for many – worse than some and better than others.  The point is, we can relate to those we serve.  Luckily, we had been given helpful resources from the beginning.  I have talked to many families that have not been as fortunate.  4Epilepsy wants to bridge that gap and offer hope to those caring for children that have epilepsy.