Daniela’s Wish …. No more twitchies! A mother’s story of living with the challenges of her daughter’s seizure disorder — Dravet Syndrome, a rare and catastrophic form of epilepsy.
Funny thing, but I knew from conception that I was going to have a girl and I would name her Daniela (in honour of my husband’s sister, may she rest in peace). My husband believed I ‘willed the baby’ to be a girl, our special angel. Little did we know how special Daniela would be! As a first time mom, I doted on my little one…with every cry, with every whimper, I was there for her. Even when my own mom would say ‘let her cry it out…don’t pick her up right away…she has to learn to soothe herself…thankfully I did not listen. I wanted to be with her always, to protect her, to swaddle her, to love her. And on that fateful day, February 10, 1993, when she cried out to me from waking from her afternoon nap, I ran to her…I couldn’t wait to be with her. But when I went to her crib, what I found changed my life; my daughter’s life; our family’s life….Daniela was lying limp, unresponsive, unconscious and [...] continue the story