Mackenzie Boswell has Dravet syndrome, a rare neurological condition causing frequent, often life-threatening, seizures. But her family is determined to help her have a joyful life.
She’s sleeping now, this 19-month-old girl with curls the color of butterscotch. Her soft white blanket with colorful dots is pulled up to her waist.
She shares a room with her 3-year-old brother, her crib on one wall, his toddler bed on the other, a bookshelf full of books, a TV playing “Frozen,” her new favorite, and six butterfly wall hangings, all purple.
Butterflies. The symbol for Dravet Syndome, a rare neurological condition that causes frequent seizures, often life threatening.
Mackenzie Boswell was diagnosed with the condition a year ago.
Sleep. Heat. Too much brain activity. Those are the known events that bring on seizures, which can last 30 minutes or more. Thirty minutes of twitching, jerking motions. She may become unresponsive, stop breathing. And with every seizure, her brain is at risk for damage, putting her further and further behind developmentally.
There is no cure.