Hayven Blue Rae

childhood epilepsy

National Institute of Neurological Disorders and Stroke

National Organization of Disorders of the Corpus Callosum

Drug Digest

HI!!! thank you for visiting my site!      My name is Hayven Blue Rae, This is MY page!!! My birthday is February 17th, 2001. I am a happy well adjusted little girl with Cerebral Palsy. I was born with a congenital brain anomoly called Agenesis of the Corpus Callosum [also called ACC]That means that the 2 sides of my brain are not connected to each other and information doesn't travel from side to side like most peoples. It just takes me much longer to "process" information and I have mobility problems. I can't walk on my own yet, but if you hold me up, I CAN! My mom can't keep up with how fast I've been crawling around the house. She always says "SLOW DOWN, Get BACK here!"      I started having Seizures when I was about 15 months old and have been on Medication ever since. I was on the Ketogenic Diet for seizure control for 3 years; that means I had to eat measured food that has LOTS & LOTS of fat in it, and almost NO carbs & sugars. October 2006 I was implanted with Vagas Nerve Stimulator that works with a magnet to stop a seizure, it's really neat like I'm a robot or something!     I live in Portland, Oregon with my mommy, Tracy, and my best friend, mom's girlfriend Ashley. My mom says I have the most beautiful smile in the whole world, even though I broke a few of my front teeth having seizures!     I hope you enjoy my website, PLEASE send me an email and sign my guestbook.

I go to a special needs childcare, where mommy works! The school bus picks me up in my wheelchair and takes me to a very special lifeskills class at my elementary school. I just started first grade!!!I have lots of friends, and even though I cannot "talk" we communicate with some sign language and lots of gestures and sounds. Playing with paper and magazines is 1 of my favorite activities, but I like to sing songs and bounce a lot too! My favorite toy right now is my moms old flip top cell phone! It makes a cool clicking noise and I can flip and fling it around above my head! it has buttons! It's FUN!!! Shriner's Hospital for Children provides Physical Therapy, Occupational Therapy and Speech Therapy services; My therapists are really nice and they help me learn new things.

My mom, Tracy keeps herself busy with all of my doctors appointments, therapies, activities, school and daycare. She is going to school to become a nurse, and she advocates for me at school and in meetings. Mom works as a teachers aide at my daycare, and just loves to play with me and snuggle. Trevor , my dad. is a chef at a popular steakhouse, rides a motorcycle and likes to get tattoos [he has a "wrap" around his arm with mine and my big sisters names on it]My [mom's side]grandparents live in Las Vegas, Nevada and are very tan! Dad's folks live in Alexander, New York, and I have more relatives in; Washington, Oregon, California, New York, Nevada, Pennsylvania, Michigan and ??...