Monday, August 22, 2011

Kids CAN Make a Difference

If you have been on this site before, you know that Angels4Epilepsy is a 501c3 started in 2010 by now eight years old Jamie.  Jamie was diagnosed with Benign Rolandic Epilepsy or BRE as it's called.  BRE is diagnosed when they can't find a reason for the sudden onset of seizures, the seizure type and the results of an EEG.  Jamie is lucky you see and you might be puzzled to wonder how I can say my child is lucky to have epilepsy.  She IS lucky in that BRE typically will go away around puberty.  For those of you that don't know about epilepsy, there are many forms or epilepsy and many types of seizures.  It's a devastating condition that can also cause death which is also referred to as SUDEP because it's sudden death that is unexplained among those with epilepsy.  I learned more than I ever wanted to know about epilepsy but I accepted it early as there was nothing else to do but to fight it.  

We went through all the trials and tribulations of finding the right medication and it's a tedious experience.  As a parent, you live in fear of every seizure and you carry around the rescue med as if it were your wallet.  You don't leave home without it.  You fear sleep because you want to be there in case a seizure starts and in some cases, seizures increase during sleep just like Jamie's type.  Every stirring of the night causes you to jerk up and check to make sure everything is okay.  It's definitely an experience and then when you add another child with her own different chronic medical conditions, you start to feel like Dr. Welby (if anyone remembers him).  My long introduction leads into the rational behind this post which is Kids CAN Make a Difference.

Jamie is the first notation as she started Angels4Epilepsy to help children hospitalized.  Even though the focus in on epilepsy, we don't restrict a hospital in delivering to any child.  When we started this in 2010, we had no idea it would grown.  We entered the Pepsi Refresh contest in August a year ago and that is about the same time, I was re-connected with my cousin, Ruthie.  It just so happened to be the date of a boat race in Ohio where they reside.  Ruthie's children, Eli, Maddie and Hannah volunteered their time and went above and beyond with raising awareness for Angels4Epilepsy and Jamie's entry with the Pepsi Refresh project.  Ruthie and her husband Jeff also participated in raising awareness for Jamie's cause.  This year was no different because I, insanely, decided to run again but this time for $25,000.  Once again, my cousin and her family jumped to help!  This is more than just family helping family as these are children eagerly helping children.


This past weekend, Eli and Maddie, twins, raced boats in the 2011 19th Annual Cardboard Boat Regatta New Richmond Riverdays.  Eli even went so far as to paint his boat with purple trim in support of epilepsy and had Angels4Epilepsy painted on it.  Eli won and Maddie came in second in her race!  Not only did they pass out flyers, wear t-shirts with the text information made by Ruthie but they had buttons on.  They encouraged others to vote and the most important thing they accomplished was to raise more awareness about epilepsy!  Ruthie's oldest, Hannah, Eli and Maddie along with their dad, Jeff are all walking in the Cincinnati Walks for Kids under the name of Team Angels4Epilepsy in the fall.

There is nothing more special than children helping one another for good causes.  It's amazing the will and desire children have and to see these children living their young lives giving back, it really is heart warming.

Special thanks to Ruthie, Jeff, Hannah, Eli and Maddie!

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