The word HOPE. Such a small word in size but a huge word in meaning. A lot of families hope their child is born healthy. Some hope their child makes the baseball team. Some is in hopes of their child marrying and having grandchildren. For a parent of a special needs child its hope that one day that their child will be self-sufficient and be able to take care of themselves. With the passage of House Bill 1, The Haleigh’s Hope Act back on April 16th gave us hope. Our youngest daughter Sydney was diagnosed with epilepsy at the age of 6 months old after started having a seizure at 4 months. They came back. This was devastated news to us. The protocol was to start with anti-epileptic medication to suppress brain activity to control the seizures. After seven different failed medications and noticing that the increase in medication comes the increase in seizures. After long thought and asking for God to give us direction my wife, Lisa and I decided to remove the medications altogether. Sydney has now been pharmaceutical free for the last eight years.
Our lives changed in August of 2013 when we watched a documentary with Dr. Sanjay Gupta. It was about a little girl by the name of Charlotte Figi. Her mom had started using Cannabis Oil also known as Medical Marijuana to help control her seizures. Sitting there with tears in our eyes we again had hope. So we started trying to find Cannabis Oil.
That journey has led us to where we are today. In July of this year we received her “card”. I’m speaking of her registry card to legally possess low THC cannabis oil. Sydney has started taking the oil soon after. During this time we have saw progress in cognition and in her special surroundings. And after her IEP at the school this year she has started meeting the some of the goals set in previous meetings, and we raised them. This is the first time we have been able to do that since she has been in school. We hav also noticed that she has been more affectionate towards he family. When her nana or papa sister, mom or even dad asked for a goodbye kiss she comes to them for that amazing kiss. Sydney has definitely shown improvements since starting the oil but she is still having breakthrough seizures. The oil that she is taking comes from South Carolina and is considered industrial hemp oil. It is from the cannabis plant but only contains .3% THC. This is the only way we can obtain the oil across state lines. That is why this is so important on the growing, cultivating, and dispensing be right here in Georgia. Gov. Deal has set up a committee to study this issue and present him with a model by this legislative session. This committee is chaired by Allen Peake Representative from Macon. Along with Rep. Peake is Representatives from the GBI, District Attorney’s, Dept. of Agriculture, Senators, Doctors, and our own Sheriff Gary Gulledge. These are the best in the state to make a safe, effective, timely model to have a better medicine for our children and adults covered under the eight different diagnoses stated in the law.
The oil is helping Sydney but we need more options. It’s like trying to shoot a target in pitch black and until you hear that “ping” of the target it’s a guessing game. But the growing, cultivation model being submitted this year will give more options to the families like ours. It will give us hope.
Thank you to Representative Peake and Representative Gravley for fighting for our children. Thank you for giving us hope. Please we urge you to contact your representative and senators on this issue for the 2016 Legislative session. To keep up with Sydney’s progress she has her own Facebook page set up. It is Sydney’s Warriors. Myself or her mom post weekly sometimes daily on her progress though this journey we call epilepsy. And thank you for your continued prayers, this is Gods medicine and he is the divine healer.