Help Kylie and Marissa in battle of the diseases

Hello all, 

As many of you know already, I myself (Kylie) was diagnosed with VHL in 2014. It is a rare genetic disease that my mother, uncle and myself suffer from. This disease causes random cysts to appear around the body in areas including but not limited to the brain, spine, kidney's, pancreas, lungs, eyes, ears etc. These cysts turn into tumors that continue growing eventually leading to surgery after surgery. I have been through several already to include operations on my spine, brain and kidneys. I have 1 kidney left and 30% of that one leaving me in the stage 4 cancer zones for Renal Cell Carcinoma (Kidney disease). The kidney's the ONLY part of this disease that is cancerous, the rest are simply obnoxious.  VHL is caused by that person lacking a gene that everyone else has that helps stop the growth of cancer cells resulting in the tumors throughout the body.

I traveled with my mother to the National Institutes of Health in Maryland for a week this last week and found I need to have brain surgery again to remove 2 tumors that are located at the end of my brain stem connecting to my spinal cord. These tumors have grown in size since July 2021 causing bad symptoms for me the last 3-4 months.

This hospital has been studying VHL since the 1960s, my mother has been coming up here for almost 20 years herself, this was my first year going. I had been waiting 2 years since COVID was cancelled for the first time in 2020, God works in mysterious ways, here I am 2 years later and getting the immediate help needed! He is so good!

They have been working on a medicine to help since the 1960s, it has been hard to pinpoint a certain drug to help everyone with this as there are 3 different mutations of VHL all of which affect everyone differently. The medicine they came out with a couple months ago has shown a 98% success rate at shrinking the tumors in the brain, spine, kidney and pancreas. All of which are the main areas affected with VHL. This medicine is called Belzutifan for my medical friends on here, I know you are asking your heads :) Once this surgery is over I can go on this medicine to hopefully NEVER have surgery again!

As most of you do NOT know, my spouse, Marissa, was diagnosed with Epilepsy in 2017 when our son August was just a year and a half old. She has "cluster" seizures, meaning she doesn't have 1 or 2, she has anywhere from 4-8 within hours of each other leading to memory loss and some time's week's of recovery time after. They have no reasonable explanation for this, there is no family history, no hard drug abuse, no TBI's, nothing to explain why. There are random things that have set them off including getting her eyes dilated at the eye doctor. Over the years and multiple concoctions, she is now on 22 pills a day to control them. Anyone who knows someone who suffers from epilepsy knows the medicine is no joke either... 

Marissa as well is going to be having brain surgery this year. She was supposed to have it December 6th, 2021 and then again January 24th, 2022, but they have postponed it twice due to COVID now. We are unsure of when she will be scheduled but got word last week they have opened up the lines for surgical procedures again and will be calling to set a date soon. 

All of that being said, we are NOT the people to ask for help. Anyone who personally knows us, knows, we are fighters, we don't give up and do not intend to either. We were ok with just her surgery and getting through that but with having now TWO brain surgeries in a year and mine being half-way across the U.S. we are left with no choice but to reach out to our loved ones for a little help in our time of need... We are simply looking to make enough to cover the medical bill's and travel expenses down.

Again, we wouldn't come asking if we didn't ABSOLUTELY have to as we know things are tight for everyone right now! We understand if you cannot and do not expect to hit this goal by any means! $5 make ya holla guys! We love all of you and once we're up and running again, promise, we will make it up to you all, even the ones who are offering up prayer, that means the world and worth more than money anyway!

Please say some prayers, this is it for us BOTH!! We've been fighting for years against these diseases and can finally see light at the end of the tunnel! 

Here's to a happy and healthy life soon! No pain, no gain. Thank you again guys, we love you. 

Kylie and Marissa Carey