Lennox Gastout Syndrome



This is our courageous 2 year old son Cohen. My pregnacy was uneventful, so we thought everything was fine. Little did we know that on November 18, 2012, our whole world would change. Cohen was born in respiratory distress due to meconium aspiration. My husband and I were told that this does happen from time to time, but the pediatric doctor did want to transfer him from the hospital in Americus to the NICU in Albany for closer specialized observation. He spent (what I thought at the time) the slowest 8 days in the hospital. My husband, Andrew, 9 year old son, Carter, and I were so happy when we were able to
bring our newest addition home, and start being a family. Fast forward to now, after over 200 days, off and on, being at the Children’s Hospital in Macon, mostly for respiratory issues, on the vent 3 times, multiple tests, and many nights praying that Cohen would have the strength to keep fighting, we still do not have many answers as to why he has these problems. Cohen has Lennox Gastout Syndrome, chronic lung disease (which is a double whammy), vision impairment, developmentally delayed (can’t sit up, crawl, walk, talk etc..about 0-4 mth level), GERD, has a g tube because he can’t suck or swallow, hypotonia, just to name a few diagnoses. The root to all these issues is currently undiagnosed. He currently takes 3 meds for his seizures, which was diagnosed when he was 15 months old. However, since birth he has jerked a lot and the neurologist at CHOA said it wasn’t seizure activity, but it was myoclonic jerking, after several EEGs, it finally picked up the seizure activity, which I think was going on the whole time. I believe in my heart that cannabis oil will help our son tremendously. If he didn’t have seizures daily, his mobility would improve so much. Right now, the onfi, topamax, and keppra cocktail keeps him so knocked/zoned out most of the day. How can he ever improve if he sleeps all day? If I don’t keep him on his meds, he has more seizures, so it’s just a lose lose situation. Every time I take him to the neurologist, he just increaeses Cohen’s meds or adds more, and he still has several seizures per day. The benefits of cannabis oil would help our son have a better quality of life, & being off the harsh meds that will eventually cause him kidney &/ or liver problems. We are so scared that a seizure can take him away from us any moment. The little amount of time that he is awake he really brightens our day, I feel like our Cohen is trapped inside his body, waiting to blossom, but can’t escape. The many tests and surgeries that he has under went, he has more courage than I could ever imagine, & I pray that one day we can see more of Cohen’s personality by having access to cannabis oil in Georgia. Please help us and many other familes dealing with untreatable seizure disorders by supporting this bill. Thank you for reading Cohen’s story & for your support.

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