My name is Charlotte and I have been Alex's best friend for 12 years.
We lived in boarding school in highschool together as roommates. The day I met Alex was my first week adjusting to this boarding school as I had just turned 15 and my world as I knew it was changing. Living in a dormatory with 35 other girls was scary and strange and it had a lot of getting used to. But then there was Alex, this gorgeous, lioness, wacky best friend soon to be mine that shook uncontrollably, but that didn't matter to me because she was willing to be my friend and my comfort and all of the fun because of her spunky and outgoing personality that I would have for the next 12 years and counting and all I could see was that person I just described... the one without the shaking.
FAST FORWARD TO TODAY,
Alex has stayed all of those things but some things have changed...
With Alex's Neurological diagnosis being something doctors do NOT know everything about, "DYSTONIA" :
WHAT DYSTONIA IS
...Alex has to be brave and put her life in the hands of the Cedars Nuerological Team as they're studying on the forefront of this pesky Neuro-Disorder, to find a mateninece that could curb the distruption of Alex's every day life which has lately been consisting of the following:
being a pin-cushion, having to have multiple surgeries, brain stimulation therapy, medications, doctors appointments, hours and hours in cat scans and MRI'S, etc...this is Alex's every day life.
The brain stimulation surgery study has changed Alex's life immensely. The device that they put into her brain is wired down her neck to a battery reciever that sits in her chest. She goes in often to see her doctors who then simulate the device with a remote control and spend hours trying to find the right frequencies and tuning that stops her shaking (uncontrollable muscle spasm's) the major symptom of her Dystonia. It has worked wonderfully. Alex's outer apperance of shaking has majorly subsided, she can function regularly on a daily basis and it has changed her life postively in so many other ways, BUT just like any study in Medicine, nothing is perfected and it's time to remove the device and install it on the other side of Alex's body/brain.
She goes into the first of ANOTHER multi-surgical series today September 25th, 2017 where they remove the previous device from her brain and chest. She will then have to spend the next several weeks healing which is an excrutiating process. Staples in your head because your skull was just drilled into and your brain was tampered with seems terrifying right? Unfortunately Alex is aquainted with this surgery well but the intense pain never gets easier. Then as she heals she will have to prepare for the next surgery to go in and install it all again on her other side of her body/brain.
Alex has a long road ahead of her and with her primary focus on getting better she isn't able to attend to regular life responsibilities or be able to work to afford basic things not everyone else has to worry about month to month like she does, because her disability checks pay her barely anything. Most people struggle at a poverty level with Social Security's disability allowance not to mention people who have to pay medical bills on top of it all like Alex does.
These responsibilities include:
RENT (WHICH SHE HAS 10 DAYS TO COME UP WITH) which is $1,200 a month which over the next 3 months that she will be going through all of these surgeries for the next 4 and half months she will be unable to work and relying on her measly disability check which barely covers her BILLS, like her cell phone, water and power.
Her remaining MEDICAL COSTS through these next series of surgeries that her insurance doesn't pick up and...
MONEY TO BUY GROCERIES and natural supplements to be able to nourish her body as she heals.
Alex hates asking for help, so I am asking FOR her because she really, REALLY needs it. She is a nervous wreck feeling like her entire world is about to collapse as she waits at Cedars, hysterically frightened about to be wheeled into surgery AGAIN and I am asking as Alex's family and friends please join me in hopes of banding together and DONATE to provide while shes in such need and to make sure this fear she shouldn't have to have of worrying about losing her home and not being able to get through these surgeries as smoothly as possible with all this extra worry and stress:
DOES NOT COME TRUE!!
THANK YOU for reading and THANK YOU if you're able to donate.
I cant express enough, how each donation, no matter the amount, will bring so much help and relief to Alex in this trying time.
XO Charlotte on behalf of ALEX JONES
- Beth Corets
- Nilo Juaneza
- Brandon Zacharie
- Giovanni cirfiera
- Zsuzsanna Budai
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