Jonah and Hollie Hughes

2018 Philadelphia Marathon, Half & 8K

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My son, Jonah, was two when he was first diagnosed with epilepsy. Then, at the age of five, my husband and I learned that he has a rare epileptic encephalopathy syndrome called CSWS/ESES. Jonah recently turned eight, and since the onset of his seizure syndrome, we've witnessed many changes to Jonah. He's still the most incredible kid, but his sparkle isn't always present. He's regressed academically, emotionally, and socially. The seizures, and the syndrome, and the medications have attempted to steal our son. They are unrelenting, persistent and unresponsive to all the therapies available to him (medications, diet, etc).

Running helps us navigate the many different aspects of Jonah's seizures, and it allows us to focus on the positive. We are extremely passionate and persistent in our running together because of its greater purpose: raising awareness for those affected by epilepsy.  By joining and becoming Athletes vs Epilepsy team members, we committed ourselves to their mission: to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. We've committed to raising funds for the Epilepsy Foundation to help them reach these goals and will run the Philadelphia Half-Marathon not just for Jonah, but on behalf of all the individuals, families, friends, and communities that are affected daily by epilepsy.  


Please support this cause by making a safe and secure donation to my fundraising webpage. Giving to the Epilepsy Foundation means you make the world a better, easier, more manageable place for the  3 million people in the U.S. who are living with epilepsy and seizures. 

Thank you for your help and support and for constantly proving that we are not alone in our efforts!

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