My name is Gabby and I’m 5 years old. I like to have fun and run everywhere….I don’t know if my feet know how to just walk…hmm…I’ll just run then. I’m very curious and like to touch everything. If you see me in the grocery store or on the street I will say “Hi” and ask “What’s your name? I’ll even ask to shake your hand and maybe give you a hug. I’m a bit of a social bunny like my Mother!
I started having seizures when I was 8 months old. The first one happened at daycare and that was scary for everyone. I landed up in the hospital for the weekend to figure out if it was febrile seizures or something more. They sent us home after no conclusive results. But soon after, I started having seizures at bath time, getting in the car, while sitting down and at random time that had no fever or cause. My Mom and Dad didn’t rush to start me on medication until they knew more but one day at daycare I had a bad seizure, was rushed to the hospital, then had multiple seizures in the ER and one that turned me very blue and stopped my breathing completely. It was very scary. It was at that time my Mom and Dad knew my body was telling them it needed more help and we started the journey of figuring out medications. I was diagnosed with Dravet Syndrome at 1 ½ years old. Although they say I’m on the “milder end” of the spectrum my parents are no less scared, they worry every day about the future for me….anything could change at any time.
My medication and my condition make it hard for me to sleep well at night. My body is always jerking throughout the night and I have a hard time paying attention and using my words at times. I’m also tired a lot and sometimes I get so angry. I’m sure I’m feeling more but I can’t say how I feel because I’m too young to put it into words but all of these medications make me not feel like me. My hope is that access to legal cannabis will help me be the real me in a naturalway.