My name is Ramon. I am a single father, a U.S. Army Veteran, and a former corrections officer. I’ve worked since I was 16 years old, then joined the Army at 18. I am a father to a wonderful 12-year-old son now.

In 2018, I was diagnosed with a super rare condition called FCS syndrome. I am the only one in the state and only 1 of 8 people who have this disease and 1 of 8 in the whole United States. I’ve tried Mayo Clinic, every specialty doctor you can think of and every diet etc but it’s just such a rare condition there is no long term treatment or cure. I have a rare form of FCS, a condition that has stopped my pancreas from making natural insulin, which in turn makes my blood very thick with what is called triglycerides. Normal triglycerides are between 150 or lower, and I live between 4,000 and 12,000 on a weekly basis, which is extremely critical and extremely fatal. There is no cure for the condition. I’ve been battling it since 2018, and it’s only progressed. It causes recurring pancreatitis, extreme abdominal pain, tremors, and lands me in the hospital 4-5 times a year for 10-20 days at a time, depending on how bad it gets. I have dialysis 2x per week to filter and clean my blood, and even with that, my triglycerides still sometimes don’t budge. It puts me at critical daily risk for a fatal heart attack and stroke. Doctors have already told me each day is a blessing because I can die at any given moment any day. I also have kidney failure and kidney disease. Currently, I’m at stage 2, approaching stage 3 kidney failure. My liver is permanently damaged due to the triglycerides in my blood, and my spleen is enlarged all the time. I live on a fixed income, permanently disabled. I live in constant pain, constant fear of this condition killing me without a moment's notice, and in fear of not being here for my son one day. That’s my biggest fear of all.

I’m a very prideful person, so making a GoFundMe asking for help is not easy for me to do, but it’s just gotten to a point with medical bills and housing. I don’t get government assistance with housing; I pay whatever rent prices are like everyone else does. Since 2018, I’ve done my best to try and stay above water, but over time, things have piled up, and I’m at a point where I need any help or support. In March of 2020, I got COVID pneumonia, and being I had a rare pre-existing condition, I was put into a coma on a ventilator with less than a 5% chance of surviving it. I was not responding to life support treatment or any other life-saving measures. It did get to the point where they had told my dad I was brain dead and that he needed to consider and be prepared to take me off life support. Tough decision for my father; I couldn’t imagine having to make that decision. It came close within a few days of him having to make that decision that I finally woke up from the coma with a last-ditch effort to remove the fluid out of my lungs with a needle. I woke up; I couldn’t speak or move. I had been intubated and had tubes in my throat. I had to learn how to walk again, talk again, pretty much learn how to be self-sufficient again, and that road was not an easy one. Many times I wanted to give up, and many times I wished I never woke up from that nightmare of a situation, but my dad reminded me to keep faith, and my son was my inspiration to not give up. My dad saved my life. He was the one who transported me to the hospital when I got COVID when the ambulance and fire department refused to help me and transport me. My dad took me, knowing he could get infected himself, but he didn’t care; he saved me.

This is not an easy story to tell. During my coma and after, we had to move. We lost the house we lived in, and we just did what we needed to do. I have recovered as far as the COVID and coma situation. It did leave permanent damage to my lungs, and it definitely changed my body and life forever. My FCS condition I was still continuously battling after the coma and COVID situation because it’s a terminal condition. I had to start all over from scratch, finding an apartment and just getting back somewhat on my feet, and I was able to do so up until this past year. Medically and personally, bills pile up, and being on a fixed income, I’ve done my best to get by. This is my story; this is my situation, and I’m at a point where I need help to catch up, maintain my vehicle, and just help get out of this hole I got in ever since my diagnosis and my coma situation. It’s never easy to ask for help, but I’m at a point where I do need help. I do my best as a father, and I hate the fact I can’t work due to so many hospital stays, dialysis, pancreatic pain, and kidney pain. There are days I can’t get up, or I’m shaking in pain. I’m just trying to get caught up so I can do my best to maintain. Emergencies have come up, the cost of living goes up, but my fixed income doesn’t come close to the cost of living increase. Vehicle repairs are needed; it’s my only transportation for me and my son. I do all of this as a father. I take care of my son; he’s with me every day, and I fight through the pain every single day because errands have to be done, going to and from school, doing everything a parent needs to do. But with my illness, trust me when I say it’s not easy. I wake up every day in pain; I go to bed every night in pain. I live every day in fear because I never know if I’m going to wake up the next day. Without a cure for this rare condition, I have zero options. I know God has a plan for us all; my dad always reminds me, and so did my grandmother. Thank you for your time if you read and understand where I’m coming from. As a man, it’s not easy asking for help or sharing such personal life hardships. God bless you all.