Delilah's Mom
My blogs
| Gender | Female |
|---|---|
| Location | San Francisco |
| Introduction | I am Delilah's mom. My lovely was born on Valentine's Day 2004. She had her first tonic-clonic status seizure at 5 months old. She seized for over an hour. Her condition was undiagnosed for the first three years of her life. During that time the seizures worsened and did not respond favorably to any of the first line medications used for intractable epilepsy. She soon began developing other seizure types, having hundreds and hundreds of seizures per day. She increasingly became weaker and more developmentally delayed. She was nonverbal, communicating only with screeches and squawks. Frequent seizures were beginning to ravage her body, creating more gross motor delays and weakness. In September 2006, after being failed by six different drugs and maxing out on another, we were finally allowed to begin the Ketogenic Diet. On the recommendation of one of her neurologists, Delilah was tested for a mutation of the SCN1A gene, an indicator of sodium channel epilepsies. Three months before her 3rd birthday, Delilah was diagnosed with Dravét Syndrome. This is her story. |
| Interests | Drawing, Painting, Reading, riding my bike, playdates, lunch time at school, writing in my diary, talking to my Grampy, hanging with my parents, walking my dog, weaving on my loom, beading, my mom's into alternative medicine, my mom wants to live off the grid and grow our own food |
| Favorite movies | Cinderella, Aladdin, Lady and The Tramp, 101 Dalmations, Lion King, Shrek, Monsters Inc., Winnie The Pooh, The Hobbit, Dora, Charlotte's Web, The Little Mermaid, Aristocats, Pocahontas, Beauty and the Beast, Finding Nemo, Alice in Wonderland, Anything Madeline...... |
| Favorite music | Music Lover |
| Favorite books | Book Lover! |