For those who don't know already, I suffer from a very rare neuro-muscular disease called Stiff Person Syndrome that causes severe muscle spasms that can tear muscles and ligaments, break bones and just generally tear my body apart.
It has progressively gotten much worse over the past 6 months and has stolen my life away from me...UNTIL NOW. I have the chance to participate in a legitimate clinical study for a stem cell transplant, that has shown extremely positive results in Stiff Person Syndrome patients!
I am so excited for the opportunity, but the problem lies that the study is at Colorado Blood Cancer Institute at the Presbyterian/ST. Luke's Medical Center in Denver. While Medicare will pay for most of the medical procedures, they will not pay for transportation, lodging when I am not admitted to the hospital, food etc. Luckily the hospital has its own lodging called The Christopher Inn, which is SO much cheaper than any other hotel in the area ($65/night compared to $180+/night!)
This is where I desparetely need help: I have my initial evaluation on December18, and I need help with airline tickets (~$200), hotel cost (~$200), transportation to and from the airport (~$100), and food while I am there (~$100). This is extremely urgent, especially the funds to get me to the evaluation on Dec 18-20, so if you can help with funds or airline miles, it would be amazing! I really need everyone's help with this!
I will then have to return to Denver for my first round of chemotherapy so there will be similar costs for that,but I will have more information following my evaluation.
Again, I am extremely excited of the possiblity of getting my life back, and with your help it is possible to do so!This study is already so much better than the initial Chicago study that I originally asked help for, that turned out to be very shady, and now that I have more information regarding it, I am glad that I didn't qualify, because I may not be here anymore!
Again, I am not someone who would normally ask for help, but I am in a desperate situation, and my only other option is to keep going downhill with this disease, especially now that the current administration has made more cuts to my insurance and I have now lost my Medicaid, which adds additional costs of $1k-$2k+/month for co-pays and medicine. I am also on the brink of losing my immunoglobulin infusions because I cannot afford the co-pay of the medication (which is 20% of ~$8k/month plus the cost of supplies and my home health care that does my infusions), and to put it bluntly, without this my condition will go downhill fast and I will die. It's an incredibly frightening thought, and I am terrified.
Thank you all SO MUCH! I am so lucky to have such a wonderful group of friends and family that always have my back: here's to a healthy me!