Layla Hollin Graham was born on March 15, 2010. She was born a healthy baby girl weighing 8 lbs 5 oz. Layla developed normally meeting all of her milestones. Around 18 months I felt that Layla’s speech was not as clear as it should be. I was not worried at all. I felt that we would just get her into speech and everything would be fine. Layla learned her colors, how to count to ten, all of her body parts, and all of her animal sounds. I have to say she was pretty much like any other 2 year old. When Layla was 3 and a half, we were attending a family reunion in Carrolton, GA. It is about an hour outside of Atlanta. Layla was playing with her cousins and had her first seizure. The seizure made her fall down a few concrete stairs. She had a goose egg on her forehead. I picked her up and she started seizing. At the time, I thought the fall caused the seizure since she had never had one before. I was terrified. In my mind, my daughter had a brain bleed from the fall and she was going to die. We called 911 and they airlifted us to Egleston Children’s hospital at Emory. Layla seized on and off for about an hour before we could get to the hospital. I cant begin to tell you how scary that day was. When we arrived at the hospital, they gave her a cat scan, said she had a concussion, and she would be fine. I was overjoyed and relieved that my baby girl was going to be ok. 2 weeks later, she and I were at home and she was watching TV, and she had another 20 minute seizure. We took her by ambulance to the hospital, and we got the dreaded epilepsy diagnosis. They put her on medication (keppra) and told me that she would be fine. Well, she wasn’t fine. The keprra turned my happy baby girl into a toddler with fits of rage. She screamed from sun up to sun down. I hated it, but since she was not seizing, I dealt with it. 2 months later, Layla had another 15 minute seizure that we stopped with rescue medications. We went to the hospital and they added Trilyptol. Within the next 2 weeks, my daughter was seizing daily with multiple seizures. Since that day, Layla shows some sort of seizure activity every day. Layla is now on 625 mg of Depakote daily. She also take .25 mg of Clonipin morning and night.
Layla’s development has stalled since the seizures have started. She has even regressed in some ways. It breaks my heart. Layla is a rare epilepsy kid even for severe epilepsy patients. She has 5 types of seizures, and you never know which one of them is coming. Layla has tonic clonic (gran mal) seizures, partial seizures, Absentee seizures, myoclonic seizures, and atonic seizures (drop attacks). The medicines she is on currently do cut the seizures down, but she still has them on a weekly basis. The medicines have terrible side effects. I watch my daughter looking like a zombie most days. When she is not a zombie, she is jerking, falling, or just simply walking into things. She is always getting hurt. But, she is tough as nails. I guess she has to be.
Layla has only been seizing since August, so we are still working on a diagnosis for her. Her doctor is fairly certain that she will be getting a diagnosis of Doose syndrome in the next few months. He is still waiting on a genetic test to rule out a few other syndromes.
So, hearing that Cannabis oil is cutting seizures in kids out in Colorado by as much as 99% is so hopeful. I am very encouraged to know that one of the first kids that started taking the cannabis oil, Charlotte’s Web, has not had a seizure in 2 years, and his diagnosis is DOOSE SYNDROME. That could be my daughter!!! Why would I not want to try this for my child?
We NEED this medication to be legal in Georgia. We NEED politicians to do the right thing and help our kids have a better quality of life. We NEED cannabis oil, and we NEED it NOW!!! Please join me and the countless other parents trying to get our children this lifesaving medicine legal in Georgia. I cant wait to see what this oil can do for my daughter. She will have it one day!! In Georgia or somewhere else, but she WILL HAVE IT!! Join our fight! Thank you!