My Nationwide Children's Hospital Columbus Marathon & 1/2 Marathon Fundraising Page!
Never heard of that sodium channel until 2018. Gianna aka "G" was 2 months old when she starting having seizures. We started our workup at Nationwide Children's Hospital. More tests brought more questions which of course brought more tests. I was reading everything I could find about early infant seizures and I stumbled upon a match for her symptoms...SCN8A. The next day my fears were confirmed when her genetic tests returned. G has a sodium channel error that cause her seizures. Cruelly known as "The Cute Syndrome". I learned that her seizures would be very difficult to control even with medications and that her mutation could be fatal. My heart broke.
To be honest it breaks some everyday. But her smile picks up the pieces and gives me hope. Hope for her and all of the other kids who are sick and would give anything to just be a normal kid. She works so hard everyday to try and be "normal". If you would like to learn more about these amazing kids go to www.thecutesyndrome.com
I am running for her. I am running for them. It is the least I can do.
Did you know the purpose of the Nationwide Children's Hospital Columbus Marathon & ½ Marathon is to raise funds to support life-saving research and care? Nationwide Children’s Hospital is committed to treating all children regardless of their family’s ability to pay, which cannot be achieved without community support and generosity.
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