The story of Tiffany
Hi my name is Tiffany. I want to tell you about my daughter Amya. Amya is almost 4 years old, we have been dealing with many many seizures since she was 28 days old. My pregnancy was normal, when she was born she was fine. Then it happened….. I had just got done feeding her, i had her on my chest, patting her back. I felt her jump, I thought maybe she felt like she was falling in her sleep. About two minutes later she jumped again, this time i lifted her off my chest and looked at her face and it was like she was looking right through me. Her eyes were glazed over, and she just had a blank stare. Her eyes were glazed over for about 30 seconds, then she was fine. She was herself again. That night I could not sleep, I just kept staring at her while she slept. Then once again she jumped, but this time she was having what looked like spasms. The next day myself, Amya, and some family members were at the shoe store and I was trying to explain to my mom what had happened. Next thing you know Amya is in her car seat in the buggy and starts twitching and jerking and she was doing it for about a minute and I grabbed her out her car seat and held her and cried cause I didnt know what was going on. Being a mother and not knowing what is wrond with her precious child is very over whelming. We rushed her to the hospital, by the time we got there Amya was knocked out asleep. The doctors told me if she wakes up and goes into the spasm DO NOT PICK HER UP RUN OUT HERE AND GET A NURSE OR DOCTOR!!!! So when Amya wakes up she starts twitching and jerking again, so I ran to the first person I seen. the woman grabs Amya and runs to the doctor so she could see what Amya was doing. She said right away it was seizures!!!!! In May of 2010 a doctor from Chapel Hill came to Wilmington to see her, this was on a Friday. That Sunday we were in Chapel Hill. She had Spinal Taps, MRIs, Cat scans, EEg test, and everything came back normal!!!! I didn’t understand. I went to Chapel Hill for 18 months and she was on 15mls of one medication, that could increases seizures in some people and decrease them in others. Well I noticed everytime the doctor would up her dose of this medication, her seizures became worse. So i asked for him to drop the dose and that i wanted to slowly take her completly off the medication. Instead he ups the dose again. I took it upon myself to take her off ALL the medications. When i began taking her off the medication her therapist all told me she was a different child. She was laughing,sitting up, holding her bottle. ALL these things she wasnt being able to do on all the medications because they just had her dopped up. I stopped taking her to Chapel Hill and started going to Duke Hospital in Durham NC. In less than a year her doctor gave me the dignoses. She has CDKL5, which has NO CURE!!!!! I was thankful for having a name and knowing what it was but NO CURE!!!! She still takes seizure medications but they DON’T WORK!!!!! I want her to be able to try the CBD OIL without us having to move from our home and family!!!! She is use to her surroundings, it would not be fair to her to have to get use to a new place, use to new therapist. Amya already goes through enough why make her go through more!!!! Legalize the CBD OIL so our children can have normal lives. IF IT WAS YOUR CHILD AND THIS OIL COULD SAVE THERE LIFE, YOU WOULD’NT BE AGAINST IT, SO WHY ARE YOU AGAINST IT NOW WHEN I COULD SAVE A CHILDS LIFE!!!!!!!!