Kailee had her first seizure at 6 months old. One day after she had her shots. It lasted over an hour. She was in the hospital for a couple of days. The doctors thought it was a reaction to the MMR shot. Two weeks later see had another seizure that lasted over an hour and was in ICU for a couple of days. At that time the doctors did an EEG and MRI and the results were normal and we were sent home with diastat.
Over the next 12 months we were in out of the hospital from seizures. They were still saying she had epilepsy. It wasn’t until she was in the hospital that a intern told us of thats common for kids with Dravet Syndrome.
We were puzzled. No one had told us that she had Dravet. We then googled it and were shocked. OMG they have to be wrong. How can she have this? Kailee was our foster child from two days old. Somehow her tests results where misplaced. We went to her Neurologist and he confirmed that she had the SCN1A mutation. At that time Department of Social Service told us that we did not have to adopt her that they could place her in a home for sick kids. OMG REALLY! She is our baby from the day we brought her home. Kailee was adopted at 18 Months old.
She has since had several different kinds of seizures. We are still learning each and every day. She is currently receiving OT, PT and Speech for developmental delays. We decided to move our family to Colorado for Kailee to try Charlotte’s Web oil. We felt that we had to try it for her.
The one thing that I want the world to know about Kailee is that she is a fighter! Dravet will not beat her! Our lives have been changed by Dravet but it will not define who we are!!!