JOURNEY OF HOPE FUND
Helping Georgia Families Find
Hi! My name is Haleigh Cox and I am 4 years old. I was diagnosed with Lennox Gastaut Syndrome at the age of 2. My Momma says that it just means that I have seizures that are not controlled by medication. Believe me, we have tried tons of medication and I was still having 100's of seizures a day. On January 10, 2014 I got very sick. My momma said I was so asleep that I wouldn't take a breath. My momma and dadda had to help me breathe while we waited for the ambulance to arrive. My momma and dadda were very scared. This would not be the end of their nightmare, but just the beginning. I had to stay in the pediatric Intensive care unit where I would continue to quit breathing multiple times a day. When I would wake up, my momma was always right next to me holding my hand and crying. I got to meet a very wonderful man that would fight as hard as he could to get me the medicine I needed. This man would come visit me in the hospital and let me know he was doing everything he could to keep my little family together.
On March 14th my momma and I got on a plane to Colorado. I left all my friends and family behind, including my dadda. We have been in Colorado for 4 months. My seizures have gone from 200plus a day to 10 on a bad day. I LOVE to smile. I have been able to look into my momma and dadda's eyes and smile when they smile at me. I have started talking (making noises) and I have been able to show when I am happy or sad. I have been able to get off of one of many seizure medications and my seizures have gotten so much better. Now I am only having 5-7 seizures a day and have even had 3 seizure free days since we've been here. I miss my dadda so much, but I know that the wonderful man that I met in January will continue to fight to get me back home and back into the arms if my dadda.
September 11, 2001 was supposed the to be the happiest day of my life, I was about to become a first time mother to a beatufiul blue eyed baby girl. At 8:52 pm on 9/11, We welcomed Victoria Elizabeth. Of course the nurses suggested that we name her, Hope or September. Something related to the events that occurred on that horrific day. I did not know then that her name would have so much more meaning to it. When Victoria was about 3 months old, She began making small jerking movements. Being a new mother and all, I rushed her to the emergency room on two occasions and continued to take her to our pediatrician hoping they would catch one of these episodes. Each time, we were sent home with a new prescription, for various things like reflux, heartburn, etc. But I knew in my heart that something was really wrong. Then on December 26, 2001, We were at the mall and Victoria began violently shaking in her car seat/stroller. I ran into a jewlrey store and yelled “my baby is having a seizure, dial 911” Two of the employees called for help simantounsly because the first time, one of them were placed on hold. A third employee rushed out to assist and she was shaking the keys in front of Victoria’s eyes and Victoria would not flinch. Finally the paramedics arrived and they said that they did not think she had a seizure because she was not sleepy, they asked me if I had ever seen anyone really have a seizure, my response was “No” but again, in my heart I knew she had a seizure. They offered to transport us to the ER, then made a backhanded comment about the $600.00 cost then suggested I could transport her myself. Of course, we went straight to the local Children’s hospital where they did the full work up and the end result- Nothing. At the time, I had so many mixed emotions all at once. I almost began to doubt myself, Yes, I was a first time mom and No, I had never seen anyone have a seizure in real life but something was not right. We were discharged that same night with a handful of referrals for a follow up visit with a Neurologist. The following day, I made several phone calls for what, I did not know. Just something called an EEG. I had no idea, this would be the first of many, I scheduled an appointment with every Doctor because the dates were so far out, then we finally had a close enough date, that would hopefully provide some answers.
On Jan. 2, 2002, we had an appt at Scottish Rite, for an EEG. As I held my 4 month old baby, I could tell something was wrong, as I watched the Technicians face. I asked repeatedly,”what’s wrong?” he would reply each time, with “I cannot tell you”, I have to wait for a Doctor to explain it all. I guess he got tired of me asking and said, I will call the on call Neurologist and have him read the EEG, and then he will talk to you but plan on being here for a while, I replied “a while, like how long?” he said atleast a week. In my mind, we were going in for a routine test, called an EEG and completly unprepared for a hospital stay of any length. After what seemed like eternity, the Doctor came into the small cramped room in fact I remember it like it was yesterday, he said these 7 words that felt like a punch in the gut “You’r daughter’s brain activity is grossly abnormal” I asked what does that mean? He said infantile spasms, basically seizures. I asked about treatment which should have been all a blur but as I listened to the sound effects, I began to sob. Our first option was ACTH, a steroid that could cause her heart to enlarge, she would need to follow up with an EKG if we choose this treatment option, or we could go with Topomax, I inquired about her heart, he explained no her heart will be fine but she would be severely developmentally delayed because she would be “a dummy or a shell” basically. Our last option was a drug called Vigabrtim. Which was not FDA approved because it could cause vision loss. I just just held Victoria and cried and cried.
Fast forward 12 years later and we’ve now had every drug option available, a VNS implant in her chest and we even obtained a seizure alert dog AND she still suffers from seizures daily.
Then last year I had a mother from California, reach out to me. She was giving her son medical marijuana for his seizures. In fact she had been administering it for about 3 years at this point. Plus her husband is a Sgt. With the California Highway Patrol so I took her advice to heart. However I knew that we live in Georgia and the thought this would NEVER be a possibility. I looked into different avenues but nothing was feasible. Then a group of determined parents got together and we tried to make history, for the sake of our suffering children. We failed during the 2014 Legislative session but not due to any effort on our part, or for those who fought for our children for that matter. Rep. Allen Peake who led the fight, acknowledged “there is no time to wait” and he created the Journey of HOPE fund, which would assist families with moving expenses and housing allowence, in the event they need to relocate to a state that allows access to cannabis oil. I honestly did not see our family utilizing this tool but God had other plans for us.
After several trips the ER, we decided that we needed to do something for Victoria. It almost seems inhumane to allow her to suffer seizure after seizure. The drugs have all failed her. This is a safe option that has proven results. Why would we NOT give this a try. On June, Friday the 13, 2014, we loaded up and drove across 5 states and two days later finally arrived in Colorado. As soon as we pulled into the driveway, of our new home, Victoria began having seizures. Then on June 18, 2014 Just moments prior to receiving her first dose of cannabis oil, she had a seizure and fell outside on the cement ground which resulted in an injury to her elbow and knees. The injury to her elbows and knees was a mild because normally she has a drop seizure and falls face first into the ground, without warning. Victoria received her first dose of cannabis oil and we’re already beginning to see results. Without the JOH fund this would not be possible.
Mama and Daddy say I’m the toughest person they know. I think that’s a good thing, but Mama says she wishes I didn’t have to be so tough. I have Lennox Gastaut Syndrome, that’s something that makes me have lots of seizures. I’ve had those seizures pretty much all my life, but I try not to let them get me down. Doctors said I’d never walk or talk. One even told Mama and Daddy they should just give up trying to help me and just accept things the way they were. You should have seen his face when I walked into the office one day! I may have been 7 years old when I learned to walk, but I never gave up. I kept working at it with Mama, Daddy, and my therapists until I got it! I think Mama and Daddy must be pretty tough too. I know my seizures hurt them. I can see it in their eyes and on their faces. I think they get pretty scared sometimes, but they never stop trying to help me. That’s why this summer, with the help of Journey of Hope, we moved to Colorado. They have a special medicine here that I wasn’t able to get back home in Georgia. So far I’ve been on the medicine for 5 weeks. I still have seizures on this new medicine, but I’m not having as many. I’ve even had 7 whole days when I didn’t have one seizure! One night I even woke up laughing! I know that may not sound like much, but Mama and Daddy said they couldn’t remember the last time I laughed. We stayed up for hours laughing with each other. It was a great night. I wish all the people who could use this medicine were able to get it without having to move to another state. I sure do miss my Granny, my uncles, aunts, and cousins. I know they understand though, and they want me to get well. Thanks to Journey of Hope, I think I just might be able to get better.