Support Jordan's Final Wish for Peace

My name is Jordan. I am a 31 year old male with a rare terminal genetic disorder called cardiac-valvular Ehler’s-danlos syndrome. On top of the cvEDS, I have over 40 other diagnosis’ that typically get overlooked, until they too, are now life threatening… I spent most of my childhood healthy, although the signs of cvEDS were always there. I fell deathly ill for the first time when I was 14… From there we spent the next nearly 4 years living in hospitals, on oxygen and in wheelchairs fighting for answers. I went from being an elite athlete who was being scouted by colleges as a freshman who was supposed to go to Florida that summer to start training with Team USA for the 2016 Beach Volleyball Olympics, to suddenly I could not even sit up in bed without fainting and having a seizure. Doctors had 0 answers. I was told I was crazy, I was making it up, it was all for attention, it was all in my head, it was from stress, it was from depression, it was from anxiety (mind you, I didn’t even have a depression or anxiety diagnosis…), you’re making yourself sick, your moms making you sick - everything EXCEPT “I’m so sorry, we don’t know what’s wrong with you.” … But finally, after nearly 4 years of fighting, we finally got some answers in 2012 after I had 24 seizures the day after Christmas… I ended up having a failed cardiac ablation but with that we got answers… I had a short circuit in my heart that was in too dangerous of a spot to try fixing, POTS, hEDS (however, the cvEDS wasn’t caught until years later in July of 2024), gastroparesis and so much more. But with treatment, slowly but surely I got to a “healthy” point in my life again. The kind of healthy I hadn’t experienced since I was a young kid. I didn’t miss a single day of work for 8 years… Fast forward to 2018 and I relapsed with my POTS - HARD. I could no longer pass any stress tests, every stress test I did only got worse, they found a tumor on my liver, I was diagnosed with polycystic disease, a grade 2 bubble in my heart, high blood pressure, median arcuate ligament syndrome and more. It’s just been a whirlwind since… Most of 2022, 2023, and 2024 were all spent in hospitals for me. After my hospitalization last July-August 2024 where I was given my first terminal diagnosis of cvEDS… And since then, I have made sure to take action and make it very clear what my wishes are. I can’t be cured, I can’t survive a transplant due to my faulty collagen from the cvEDS, and I’ve been fighting for 17 years. This has led to my decision to go on Hospice, which I have been on since March 26, 2025.

Now, I just want to move close to my mommy, start over fresh with a new medical team and enjoy my remaining time I have left on Earth with my momma. I’m going downhill fast so I’m trying to get to Alabama as soon as possible but I really need help!

I am so very sorry that I am even asking for help, I just don’t know what else to do.

If you took the time to read this, thank you. Bless you. I appreciate you more than you know.