My name is Michala Hopkins. I am five years old. I was diagnosed with Aicardi syndrome when I was two months old. I had my first seizure when I was 3 weeks old.
My daddy’s name is Mike and my mommie’s name is Kelli. I have a sister named Mary Elizabeth that is 10. She has Mitochondrial Encephalomyopathy. The doctors told my daddy and mommie the chances of them having another baby with a Mitochondrial disease was very slim. When I had my first seizure they just knew that’s what I had. Instead I had something completely different and rare. My daddy and mommie decided to have another baby. Her name is Marlee Anne and she is 14 months old. YIKES! Has she ever changed things around here. She can be such a baby sometimes. She tries to get all the attention but believe me I push my way in there. She is really lots of fun sometimes. Don’t tell my parents I said that though. I don’t want them to know I kinda like her.
Let’s talk more about me. When I was born I had a vascular malformation on my foot. When I was 12 months old it was diagnosed as Angiosarcoma which is a rare form of cancer. I had two surgeries to try to remove the cancer. I ended up having my leg amputated through the knee. I had chemotherapy. I am cancer free and go each year for scans. Losing my leg hasn’t slowed me down. I get around really good by scooting. The only hing that slows me down some are those nasty eizures that I have everyday. Right now every time I start to eat or when it rains I have a seizure. I know that’s really weird but it’s true.
Well that’s a little bit about me and my family. I also have a huge extended family of Aicardi sisters and their parents and siblings. They are just great.