Hi! My name is Dakotah Ashleigh Hughes. I was born February 10, 1998. I have a wonderful big brother, Nathan and a chocolate lab named Tucker. Here is my story…
My mommy thought she had a normal little girl until I was 2 months old and started having seizures. That is when she met my wonderful neurologist, Dr. Jacinto. He admitted me to the hospital for testing and they found 4 cysts inside my brain. I was admitted to All Children’s Hospital in St. Petersburg, Florida so they could stabilize my seizures and perform a craniotomy (brain surgery) on me on 4/28/98. My mom was really scared. My surgeon, Dr. Tuitte, was awesome and successfully drained all the cysts. Luckily I did not have to have a shunt and the cysts have not come back.
I was actually diagnosed with Aicardi Syndrome when I was four months old by the neuro-ophthalmologist, Dr. Gross. My mom was very strong for me and began doing research and found the Aicardi Newsletter group. We went to our first conference the summer of 1998 and mommy got to meet other girls with Aicardi Syndrome and their families.
I have had several other surgeries. I had a feeding tube placed in February 2000 and I get 100% of my nutrition this way. I had a nissen fundoplication done in November 2000 because I had a lot of reflux. I have also had three sets of ear tubes put in because of chronic ear infections. I do have scoliosis (a 53 degree C-curve) and I wear a back brace (TLSO) for this 23 hours a day. I also wear AFOs on my feet to keep my muscles from tightening. I take seizure medications everyday (currently Topamax and Depakane). They seem to be working pretty well, but I do still have seizures – just not as many as when I was a baby.
I am not able to roll over yet, sit up or crawl. I cannot support any of my weight and depend on my mommy for everything! She bathes me, dresses me, changes my diapers, etc. everyday!!!!! She take really good care of me!!! I ride in a wheelchair to get around. I do know my name and the voices of people that I care about. A lot of people think that I am saying "hi" now when they say "hi" to me. I am a very happy little girl and smile a lot. I love to watch football and cartoons.
Thank you for taking the time to read my story.
Love,
Dakotah
12-10-2008
