Help Marie stay alive with her medical mystery ♥️

It’s nice to meet you my name is Marie I appreciate you just coming by & hearing my story.

For those who hate long novels, this is a short & sweet description:

I have a terminal medical condition I just caught at 32. No. Surgeon can help me and my chance is survival is EXTREMELY LOW. It’s only in .01% of adults. I can no longer keep up with appointments and treatments and home bills because I’m still trying to pay for them now. In order to stay alive, I had to basically quit everything in my life.

Your donations really do help me keep living.

No one should have to choose between their health & paying bills. This is the actually position I feel I’m in.

how it started:

In November 2020 I went into the hospital with symptoms that felt like a heart attack. There was a huge bulge popping out of the center of my chest in the sternum area, that looks like a yo-yo pounding non stop.

My upper abdomen was fully distended I thought my ribs were broken & my organs were falling out or something. They immediately sent me in for scans and what they found is a MEDICAL MYSTERY.

MY MEDICAL DISCOVERY

I was diagnosed with Intestinal Malrotation.

It is a rare prenatal abnormality in which a baby's intestine doesn't form or rotate in the right way in their abdomen. It occurs early in pregnancy (around the 10th week) and develops when a baby's intestine fails to coil into the proper position.

This is normally caught and fixed with surgery at birth or in the first year of life.

However, I am the .01% of adults diagnosed.

I am 34 now.

Not only are they not formed correctly or not working properly anymore, my organs are in wrong places.

Ex: my appendix is in the back of my left UPPER RIBS.

Treatment:

Unfortunately in my rare and extensive case, it is terminal. The surgeons at Stanford medical describe me as “a car made with faulty parts and now it’s shutting down the entire engine.”

There is no timeframe. Each case is so different. We can only heavily monitor my health.

Every major surgeon on the west coast of the United States cannot perform a surgery to fix my Intestinal Malrotation.

I have a 40-50% survival rate with a surgery & that’s with the BEST for this in the USA… in OHIO.

If and when I do have surgery, If I LIVE, I will be on certain tubes & a colostomy bag.

I have done 10 scans in less then 2 years.

Blood work like crazy

Bed rest for MONTHS

NO SOLID FOODS majority of the week.

I HAD TO SLOW DOWN MY LIFE TO STAY ALIVE.

I had to quit my entire business that was based off fitness and sports activities.

As well ax coaching surfing & youth sports.

I can no longer sit for long periods of time either.

i cannot run for long anymore

or lift anything over 30lbs.

I can’t surf or do any sports for the huge chance I will stroke out during it.

With me having to change my entire life and not be able to physically move much anymore, it’s been really hard to work and keep up the income to pay for the medical bills and our house bills. I already missed a couple of their birthdays because I was in the hospital.

This had been the hardest thing to write and post. I have just hit my limit. I can no longer afford to keep up my health & food and bills.

This isn’t just about me, I have 3 kids I want to be able to watch grow up. This diagnosis has left me with the chance of having my intestines rupture just from puking.

Where the funds will go:

The money that I am able to raise will go towards all the back medical bills I have accumulated from this.

As well as help for the next year:

-constant transportation to Stanford

-Upcoming lifetime cat scans and bloodwork

-VITAMINS & treatment (my small bowel is not taking many nutrients anymore)

-Physical therapy

Anything helps. Please share this. I appreciate your time in reading and hearing my story that is just beginning.

Thank you from all of us.

Me (Marie), Khymora, Naasson & Marley