Hi - My name is Sean.  I am the 1 in 26 who will be diagnosed with epilepsy.  I am the 1 in 1,000,000 who will spontaneously have Menkes disease.  I am the less than 5% given these odd who will turn 3!  I am strong!  I am funny!  I am resilient!  Mom says I am her everything, Dad says I am his superhero, and Danny calls me Shaw, Shaw and squeezes me too tight!  

I work hard every day with the help of nanny Maggie, my compassionate therapists and my family.  Kids like like me work extra hard, but we also laugh extra loud and smile extra big because we are lucky!   

I am like any other 3 year old - I love Curious George, gear toys and all things animals.  I think it is kind of funny when Danny gets mad - so in many ways I am like any other 3 year old big brother.  I just use my talker to communicate while I find my voice and my chairs to zoom around as my legs get strong because what boy doesn't like to zoom around!   

Mom and Dad are doing 260 miles on the road and bike over the 26 days leading up to my birthday to show their commitment to the research needed for kids like me and to find a cure for epilepsy.  

My family and I celebrate every single day as a gift!  As I turn 3 I know I am lucky, and so is my family to have me!  I want to help find a CURE for kids like me so one day kids don't have to fight these challenges!  I am stronger every day and want other kids to have the support to get stronger too!

Thank you for your love and support! 

Seany Matt