Birth Date - February 11, 2014
Diagnosis - Dravet Syndrome
THEME: “SWEETS,” to include lollipops, ice cream, candies (including chocolate), and cupcakes. NO FRUIT. NO PIES.
Quilt Deadline: 11/1/16
When Lucy was about 6 months old, I was cooking dinner and she was in her exersaucer. One minute she was playing and the next she was slumped over having a violent tonic clonic seizure. She continued to seize for nearly 35 minutes. It was initially written off as an abnormal febrile seizure that she would outgrow. Two weeks later she had another seizure. Fortunately we were traveling and happened to be near a hospital that had held several clinical trials for Dravet Syndrome and were well versed on the disorder. They took note of her very prolonged seizures and mentioned Dravet as a possibility. When we were back in the hospital two months later for prolonged seizures, we decided to have genetic testing. We never would have guessed she would test positive for a disease causing SCN1A mutation. Our entire world was flipped upside down and inside out.
We have come such a long way since her diagnosis. Despite persistent seizures that result in ambulance rides to the ER 2-3 times a month, this little girl is such a fighter and is doing amazing. She has taught us so much about life. 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 too. We worry 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 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 every day we will absolutely cherish.
It is so beautiful and Lucy absolutely loves it! Thank you all so much for all the time and effort so many people put into this beautiful quilt.