Alexis was seven and a half when #FIRES hit. Febrile Infection-Related Epilepsy Syndrome is a rare epilepsy syndrome causing up to hundreds of seizures a day. Her mom shared her daughter's story.
Alexis was normal, healthy child, walking around, talking, and going to school. She was even star student of the month.
She had a fever for a couple of days, and her dad thought he heard something in the middle of the night and went and checked on her, and we found her having her first seizure.
She was put in a medically induced coma for four and a half months. Bodies shouldn't be sleeping for that long. And then when she came out, she was not the same kid.
Today she continues to seize. She has permanent brain damage now, and I know that a lot of it is from how long she was in a coma for. And the drugs, I mean, that's just poison. It's just poison like constantly in you at all times. She's been on some pretty
nasty, disgusting stuff. I think she's tried almost everything out there. Right now she's on seven drugs, including a specialized diet that she's on.
For the last three years, I'm constantly trying to get these meds out of her. Just trying to get just a little bit at a time, just lower it, lower it, lower it, because every time that we do, it's like a new kid. A little piece of her comes back. Every time that we take a little bit of those drugs away from her, she does amazing.
Alexis has been in a wheelchair and has not spoken or walked in 4 years.
I didn't know that Alexis did understand what was going on around her until her dad and I were sitting on the couch one day, and I was telling him a pretty complicated, sad story. I mean, it was sad. Anybody that heard it would have cried.
I looked over at Alexis and she was crying. And that's when I knew that she completely understood what was going on, and I'm so grateful that I know she understands what is going on, because I don't know if we would've realized that she's trapped in there. I didn't think she understood anything.
She's trapped inside her body, is basically what it is. And she's trapped on drugs, pharmaceuticals, that are killing her brain. And killing her motor skills.
But maybe if she wasn't on so much medication, and she did have the CBD oil, it would be a little easier. I believe that it would make our life a lot easier. If it were legal, I definitely would be giving Alexis medical marijuana, CBD, whatever we could get our hands on. I mean, whatever to help her. I mean, it's natural. It's so much better than this garbage that she has to be on. I just wish that it wasn't so... hard to get something that's just so natural.
So what is CBD? Cannabidiol is a cannabis compound without the psychoactive effects of THC. Scientific and clinical research--much of it sponsored by the US government--underscores CBD's potential as a treatment for a wide range of conditions, including arthritis, diabetes, MS, chronic pain, schizophrenia, PTSD, depression, epilepsy, and other neurological disorders.
As a reader you may judge a parent wanting to give a child cannabis. Imagine if your child or a loved one was epileptic what would you do to help her or him? What if your child was trapped in her or his body? What if you knew about a natural cure but it was illegal in the state you lived in and your only option was to break the law or keep your child on pharmaceuticals with side effects keeping your child in a wheel chair, unable to move or to talk? What would you do?
These parents chose to wean her off of the pharmaceutical drugs and within weeks she stood for the first time in four years on her own. So yeah, what would you do?