This year I have joined the athletes vs epilepsy team and will be running the NYC Marathon for one special little girl- my great niece, Scarlett. I asked my niece (her mom) to tell a little bit of her story.
"Scarlett is a sweet and loving 5year old girl. She’s has big brown eyes and beautiful brown curls. When Scarlett was 7 weeks old she started having refractory seizures. We were told she had epilepsy but they didn’t know why. She’s spent most of her life in and out of hospitals and has seen a plethora of specialists and neurologists. At 10 months old she was also having infantile spasms and it was discovered through genetic testing that she has a very rare genetic mutation of her SMC1A gene. This type of gene mutation causes severe early onset epilepsy, with a resistance to pharmaceutical medication and causes developmental delay. She’s tried 12 different types of seizure medication throughout her life, each with their own set of side effects and so far has not reached 100% seizure free. Her genetic mutation is very rare and therefore there is a lot to discover and research still. We are hoping one day we will know so much more than we do now. However, Scarlett is so much more than her epilepsy. She’s a beautiful, brave, warrior princess. She fights for her life every moment of every day. She has taught our family more than we could have ever imagined. She has shown us how beautiful a simple smile or giggle can be, when you’ve waited months to see it again. She’s taught us to not take for granted every moment of joy we are blessed with in life. Even if that moment is fleeting, you hold on tight and cherish it like the miracle it is. She’s shown us what true bravery looks like. She is sensitive and sweet and deeply intuitive. We will never stop fighting for a cure. We will never stop fighting because, she fights, we fight. Our whole family has been blessed to have Scarlett in our lives. We feel proud that we were given our very own miracle, our warrior princess, Scarlett ❤️."
This is why I am raising funds to make a difference in the lives of people living with epilepsy. The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.
Please support this cause by making a safe and secure donation to my fundraising webpage.