Julianna Hope was born in Tampa, Florida after a quick and uneventful delivery. At that time everything seemed to be perfect. It was not until 4 months and two weeks later that the seizures began. We spent the several months traveling the United States looking for answers only to finally receive the Aicardi Syndrome diagnosis two blocks from our home.
We also were fortunate enough to meet Dr. Aicardi in Miami and he confirmed Julianna's diagnosis at that time. At that time he told us that he believed she was a classic case. She surprised us by sitting up at 14 months and walking by 22 months. Speech took a whole lot longer. Even to this day, Jules can still comprehend far more than she can vocalize. We ended up having to move to Pittsburgh, PA for the best speech pathologist to help Jules. We lived in PA for 9 years and then decided to move back to Florida for the warm weather and family obligations.
Today Julianna is 15. She can read at a second grade level, work on a computer, and does math problems. She is full of excitement and life. She is the first person to notice when someone is upset and is a great friend. She continues to amaze us with her keen sense of humor.
Julianna's Top 10 List:
1. Big Poppa- her 120lb Great Pyrenees dog along with Belle alias Alien and Hannah for Hannah Montana
2. Chicken Nuggets and French Fries from either McDonalds or Wendys.
3. Listening to Hannah Montana at deafening decibels.
4. Playing Basketball.
5. Swimming in the pool with her BFF Lauren.
6. Socializing with friends and family.
7. Going Bowling every Sunday with her Dad.
8. Being a lazy teenager, lying on the her bed watching TV while ignoring her Mom.
9. Going shopping at the mall, especially Delia's to pick out the latest fashion trends.
10. Playing Wii Sports with her friends.
Although Jules still has daily seizures we try to keep her life as normal and fun as possible. We continue to take her places, such as Disney even though it requires a lot more planning. We usually bring her best friend Lauren where ever we go as they just love to be together.
06-07-2010
