Help Mikey fight Pophyria/Neck Surgery



Hi, I'm Mike Rossi and I need your help! I'm 38 years old, and worked as a Volunteer EMT/Firefighter for 10 years.
In 2007 after having knee surgery, I became sick with a mysterious illness. Since then, I've been hospitalized over 60 times, those of which included a few stays of more than 25-32 days. Nobody could figure what was wrong with me until finally I saw a hematologist and they tested me for what's called Acute Intermittent Porphyria. What Porphyria is, is a rare blood enzyme deficiency that causes acute attacks in your nerves and can lead to failure in one, or multiple organs.
When all of this began, I was well employed building Porsche race cars and doing high end body work. My employer even kept me on health insurance for a few months after I could no longer work hoping this would all resolve itself. Unfortunately, it never gave up and I've been in and out of the hospital constantly, wracking up enormous medical debt.
Now, to add fuel to the fire, I have a few bulging disks in my neck that have opened themselves up to the onslaught of the Porphyria attacks. In the last 2 years, I have lost 50% of not only the feeling, but strength in my arms. After the most recent attack, performing a MRI, and seeing my Neurologist, he says these three vertebrae must be fused back together within the next 5-6 months or I should expect not only to lose more feeling, but to not have any nerve feeling come back. Due to being hospitalized so frequently, I've been unable to work at all. I've had to rely on family and friends to just get by at this point.
I have lawyers working for me to get SSI disability which has been in progress for 4 years now. My State (Md) medicaid is tied to my SSI case, and although they have given me PAC assistance, my medicaid wont go through till my SSI case is out of appeals. My problem is time. We're 4-5 years into this case and my disease is progressing faster than my government. I was told directly from my Neurologist that I should have had this surgery 3 months ago. I'm at my wits end and trying anything I can think of to get this done. The fear of losing more of my arms is more than I can bear. So, here I am desperately asking for any assistance people can offer. I know this is a crowd-funding site, but I'm equally open to ideas or contacts that might help me get this all resolved. If you have any insight to offer, I can be reached at [email redacted].


Thank you greatly for the time you took to read my story and maybe any insight/ideas you have to offer.
Much love to all,
Mikey
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Organizer

Mike Rossi 
Organizer
Germantown, MD
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