Help Support Shea’s Family Through Medical Journey

Hi, Everyone! I've been holding out creating this campaign (because I really am not good asking for help) but we really need lots of help right now. 

Early in 2020 I started feeling REALLY bad and started having a lot of weird medical symptoms that I couldn't explain and neither could my doctors. By 9/2020, I had to stop working and go on disability from work at home. By that time I was already mostly bedridden.

For anyone that doesn't know me, I am a single mom of a teenage daughter and I have busted my butt in the Sales/Startup world for years to provide for my family. So having NO energy and only being able to lay in bed all day and not be the mom I've always been is the hardest thing I NEVER imagined could happen. 

After seeing SOOO many doctors (about 15) and countless appointments and tests, one doctor finally had a stroke of insight and decided to test me for a VERY rare condition called Chronic Active Epstein-Barr Virus. The tests were overwhelmingly positive. That was about 2 months ago and I'm still coming to grips with the severity of that diagnosis. 

EBV is something that 95% of humans get in the world. It sometimes causes Mono in about 20% of humans. For some of those people who get mono, the latent EBV virus becomes "Reactivated EBV" which means those people can get mono more than once in their life. For even less people, they can get Chronic EBV which means they can get mono over and over during a much longer period of time (like years). 

In the MOST RARE situation (about 20 people in the United States - per year!!!) , who get mono have their EBV triggered into what I have which is "Chronic Active EBV." 

That means that I have the worst possible type of the condition which is always ACTIVE and will be for the rest of my life. No ups and downs, just UP (and awful) all the time.

CAEBV has no cure (chemo doesn't even kill it), no treatment (literally nothing works to kill it), and only has 3 possible outcomes (as of now in science). Cancer, organ failure, death. 

Most people die within 1-5 years but I am lucky to know a couple people who have had it 9 - 13 years and are still alive. 

I hate talking about this so much. I don't want this to be real and I don't like the feeling of scaring my friends and family that I love so so so much. But this is happening and I want to be able to be here for my daughter, my family, friends, my dogs, my art, and anything else I can possibly enjoy in this life. 

I am in terrible pain 100% of the time (CAEBV causes muscle swelling and pain/bone pain/organ pain), my Spleen and Liver are already damaged, my GI system is damaged, my skin is damaged, and my Central Nervous System and autonomic nervous system are affected too. I even have a brand new issue that will probably need surgery to solve...

I FINALLY found an Infectious Disease specialist IN AUSTIN that supposedly has treated others with CAEBV and I am waiting to get in with her. My hope is that she has some answers that no one else does and I can at least stay healthy enough to survive longer than what is written in the current literature AND have some peace and wellness and comfort and relief while I am still here. 

I am asking for help for these things:
- Prescriptions for pain and issues involving my organs that are damaged
- Help with copays for all my specialist appts (sometimes it's 5 appts a week :(
- Cervical Spine MRI
- Abdominal Ultrasound
- Thoracic Spine X-ray
- LOTS of blood tests
- Lower abdominal surgery (pending tests for current new issue)
- WITH insurance, each appt is $100 co-pay
- Paying the rest of my giant insurance deductible for this year so that tests and procedures won't be as expensive and unattainable. 
- I am not working and my mom is paying for everything and can't sustain that anymore. 
- I am lucky enough to still have insurance but probably won't forever and so I will need to pay out of pocket FULLY for my net insurance policy for me AND Nevaeh and that will probably be at least $1000 per month...
- Basic financial needs for existing in this world and being a mom. 

Here are some links for info about CAEBV if you'd like to read about the condition to better understand what we are facing:

- Basic Info on CAEBV 
- CAEBV Wikipedia 
- Some Cancers caused by CAEBV 
- Frequency of CAEBV in General Medicine 
- Prognostic Factors for CAEBV 
- Additional medical literature on CAEBV 

The ONE video on YouTube about CAEBV:

Thank you so much for listening and I hope you are all doing well in this crazy time of the planet right now. 

<3 Love and hugs from Shea and Vay