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| 2017: 5 seizure meds and ketogenic diet 2018: 1 seizure med and CBD oil (low thc high cbd) |
Emma is my why for voting YES to Prop 2: Supporting Medical Cannabis in Utah. Emma was born with a rare brain disorder called Lissencephaly (click for more info) meaning smooth brain. Emma is a fighter and has worked hard to overcome the grim outlook Drs gave her. But in January 2017 Emma's seizures started to take over her life. She started having 15-20 seizures a day, sleeping over 20 hours a day. She was stuck in a vicious cycle....sleep, wake up seize, then sleep again. Poor little girl couldn't catch a break. By May 2017 she was on 5 anti-seizure meds and the ketogenic diet. Her body was literally shutting down she couldn't handle it anymore, she needed oxygen, bipap to sleep at night cause her brain was forgetting to tell her to breathe, and she started to choke on her own saliva because she wasn't strong enough to control her swallow, which in turn meant she couldn't eat by mouth anymore either. I was losing my baby girl....
In October of 2017 we decided to start weaning some meds that weren't working, which was so hard because one of them was a Benzo and she had the worst withdrawals. Watching your 2 year old go through withdrawls is the hardest thing, but it was that or continue to watch her decline due to these meds that were destroying her little fragile body. Then in November 2017 we decided to wean off the ketogenic diet. We were now down to 4 meds and back to normal formula so our next choice was to decide which med we wanted to try next. We decided to get off all meds that weren't working and try a new CBD oil since Emma qualified for CBD oil here in Utah under Charlee's Law HB105 (Allows Utah citizens with intractable epilepsy to possess high-CBD/low-THC
cannabis (medical hemp) oil without risk of prosecution by the state of Utah).We started this new CBD oil in March of 2018 and we are starting to get our sweet Emma back. As you can see in the picture above Emma was having an avg of 500 seizures (avg 16 a day) a month in Sept. 2017 last month (Aug 2018) Emma had 71 seizures (avg 2 a day). CBD oil has not only been life changing but life saving for Emma. However she is still struggling with seizures and we have seen other children with Emma's same diagnosis in legal states who need that extra THC to battle those seizures where CBD just isn't enough. One interesting fact regarding the CBD oil that Emma is allowed to use in Utah is it has to be below .3% in THC, and that is the same amount allowed in clothing and paper made of hemp. Now come on that's nothing, we deserve more rights than paper and clothing don't we? This is where I ask you to please vote yes to Prop 2. Emma also has very high muscle tone (spasticity) which means her muscles are very tight almost all of the time so she has muscle spasms and a can have nerve pain. The added THC will help Emma be able to relax those muscles to help get the most out of her therapy time and hopefully decrease her seizures because the pain from the muscle tightness can also trigger seizures. Here is a chart to help explain why Emma and others like her can benefit from not only CBD but THC it has some very important medical benefits as well...
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| REF: https://www.terravidahc.com/blog-1/2017/9/27/medical-marijuana-understanding-cbd-vs-thc |
I am so grateful for Charlee's Law but I am heartbroken that it is scheduled to sunset in 2021. Which makes this vote even more important, my heart breaks to think that we may have to up and move just so that Emma can have the quality of life that she deserves.
What kind of life is Emma living if she is living like these pictures below???? If Emma was your child would you be able to watch 20-25 seizures a day? I dare you to watch the videos above 20-25 times and then tell me you wouldn't try anything to get your baby back???? I believe we should all be given the choice to try...if that's not a choice you would choose then that's fine but it should be a choice between a patient and their Dr. Everyone deserves the right to try a medicine of their choice and yes Cannabis is Medicine!
This is how I want to see Emma living her life....
She deserves quality of life just like everyone else!!!
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| This was Emma in July of 2018 working so hard to get her strength back |
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| Emma was able to start school (it wouldn't have been possible with 20-25 seizures a day) |
She was also able to participate in a Dream Come True for her and her big sister. Which wouldn't have been possible without Cannabis......
Please take the time to read Prop 2, ask any questions you have and make the right decisions for hundreds of Utahns with qualifying conditions that deserve the right to use Medical Cannabis.
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| REF: https://www.facebook.com/UtahNext/photos/a.729703964087023/756558314734921/?type=3&theater |
Rest In Peace Sweet Charlee! I wish you would have gotten the chance to try CBD oil like Emma. We think of you daily and are so grateful for you, your parents, and all the others who helped make this Law happen for families like ours. I will never forget the first time I ever met you, your spirit was incredible. I never heard you speak, but o boy those eyes told me so much. Charlee you made a huge impact on so many lives and changed people for the better. Your life here on Earth was far too short but I do believe you are still working your magic watching over my sweet Emma. Love you Charlee Keep dancing with the angels and cheering for those Broncos!
