Lennox Gastaux Syndrome



Hi! I am Haleigh Cox. I am 4 years old and have Lennox Gastaux Syndrome. I have 100+ seizures a day and I am maxed out on 4 different seizure medications. I was born 7/19/2009 as a normal happy go lucky baby. I started having seizures when I was 8 months old, I was diagnosed with cerebral palsy at 9months old. My parents took me to Duke to have my cord blood reinfused an I started making big gains in development. I was laughing, babbling, and sitting on my own. Then, the infantile spasms hit. Infantile spasms is one of the worst seizure diagnosis that you can get. My parents cried a lot. They had to give me shots twice a day to help make those seizures stop. They did stop, but only for 6 weeks. We tried another medicine that causes blindness in young children and I had to go and get my eyes checked all of the time. That one got rid of the infantile spasms, but it uncovered 4 different types of seizures that are coming from different parts of my brain. Did my parents give up there? No! We tried the ketogenic diet which is a high fat, low carb, low protein diet. That was the only thing that seemed to “control” my seizures. I was diagnosed with type 1 diabetes a few months after being on the diet. The doctors wanted to take me off the diet, but my parents pushed to keep me on. My momma and dadda constantly struggle to keep my blood sugars balanced. It is a roller coaster of ups and downs all the time. They took me to Memphis, TN to see if we could do anything else to stop the seizures. They implanted the VNS device to help change the chemistry of the brain. It is not working. On January 10th of this year, my mother told me I got very sick. She said I quit breathing and turned blue. She said I wouldn’t respond to her when she tried to wake me up. She said she would try and get me out of my chair and I would just slide through her arms. Momma told me she had to help me breath and she ran to get Dadda out of bed. Dadda came out and helped to get me breathing again. They called 911 and rushed me to the hospital. I have now been in the PICU for 6 weeks. I have quit breathing more times than my parents could count. My body is tired. They had to take me off my special diet because I have lost 5lbs in 2 weeks. We moved to Colorado in The middle of March. I have been on a cannabis oil called “Haleigh’s Hope” and it has saved my life. I am smiling all the time, looking my parents in the eyes, trying to sit on my own and swinging in a toddler swing all by myself. My momma has been able to see so many changes, but my dadda has to wait till he comes to visit me from Georgia to see everything I have been doing. Please help bring me and my friends back home to Georgia. We miss our family and friends!

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