Project Description

Lucy’s Story

This is Lucy. Our smart, funny, spunky 2 year old. She was born without complications in February of 2014 and we lead a very normal life until the day she received her 6 month vaccinations. I was cooking dinner, she was playing in her exersaucer one minute and the next she was slumped over having a violent tonic clonic seizure. She continued to seize for nearly 35 minutes. Initially written off as an abnormal febrile seizure she will outgrow, we were once again revisited by the seizure monster two weeks later. Fortunate for us, we were traveling and happened to land at a hospital that had held several clinical trials for Dravet so they were well versed on the disorder. They took note regarding her very prolonged seizures and mentioned Dravet as a possibility. When we landed back in the hospital two months later for prolonged seizures we decided to go forward with the genetic testing. We never in a million years would have guessed she would have tested positive for a disease causing SCN1A mutation. Our entire world was flipped upside down and inside out.


That was a little over a year ago at this point and we have come such a long way. Despite these persistent seizures that land us in an ambulance and ER averaging 2-3 times a month, this little girl is such a fighter and doing amazing. She has taught us more about life in this last year, than anything else in our lifetimes. We’ve learned how to love in a different way, how to truly live in the moment, to laugh more and hug harder. Dravet is not for the faint of heart, it can take so much away from a family, but it can also bring a tremendous amount of life lessons to a family too. We worry everyday about the future and what Dravet will mean for our Lucy. Will she fall behind one day, will she stop walking one day, will it take her life one day? We have so many questions we honestly probably don’t want the answers to but what we have today is nothing short of amazing. We will take this one day at a time. Some days we will laugh and some days we will cry but everyday we will absolutely cherish.