Over thirty-two years ago, my loving mother was suddenly taken from us at a very, very young age, much younger than I am right now. The cause of death was determined to be Primary Amyloidosis. This was, and still is, extremely rare. The doctors were quite baffled at what was happening to my mother. I recall one of the doctors telling my father that my mother would probably be featured in a medical journal because her condition was so rare. There was no treatment, and there was no cure. It is considered a terminal disease and it is also genetic. It seems like, in just a few weeks, it destroyed her from the inside out. You couldn't tell she was sick by looking at her, but you could tell something was wrong by the way she moved.

I tell you this because I have officially been diagnosed with hATTR Amyloidosis. What I originally thought were just certain parts of my body starting to age turned out to be a bit more than that. Blood tests were performed, and I had the distinct displeasure of having a bone marrow test to receive an official diagnosis, which I highly recommend (I hope you detected the sarcasm in that comment). This is what officially confirmed the diagnosis. I sent my sister a copy of the exact blood tests that I had done, and fortunately, hers came back normal. Thank God, she has been through enough and she is in her sixth year of remission from Stage IV colorectal cancer.

Hereditary transthyretin-mediated (hATTR) amyloidosis is a progressive disease characterized by the deposition of amyloid fibrils in various organs and tissues of the body. There are a wide variety of clinical presentations for this multisystemic disorder, so it is often subject to delayed diagnosis. Less than 50,000 people per year receive this diagnosis. Not a club I wanted to be a part of. Unfortunately, there is still no cure, but now several treatment options are available. If I don’t undergo treatment, I don’t have to tell you what will eventually happen. A typical prognosis can range from 6 months to 15 years. However, I have no intention of letting that happen. I plan to be around to annoy every one of you for quite some time.

Has this changed my life? Absolutely. However, I will not let it dictate how I live my life. I am currently undergoing treatments, and there are other avenues available if my current program doesn’t work the way that it is supposed to. Some things are a little bit harder to do. Running, for now, is completely out of the question. And that disappointed me a lot because it was something that I enjoyed doing. An occasional walk is often helpful, but my body is in pain virtually 24 hours a day. The best way to describe it is to think about how your hand feels if you lay on it too long and it falls asleep. Well, that’s how my entire body feels (10 times stronger) and I can’t just shake it off and get rid of it. Fortunately, I do have medication to control the pain, but I try very hard not to rely on that too much. I don’t need another addiction in my life. Star Wars and Disney are enough. Will you still see crazy posts of me from WDW? Absolutely! They may not be as frequent, but that is still my happy place. I guess one of the upsides of having a terminal disease is that you don’t have to wait in line anymore for most things. That was more sarcasm, by the way. I’d rather wait in a 3-hour line than go through all of this.

Because I mainly work from home, I am still able to function and do my job. I used to enjoy Lyft driving on the side, because I met some great people, and made some great money. Unfortunately, I can’t do that as much anymore, as sitting in one position for too long can be quite painful. I’ve had to make some changes in my diet because the treatment that I am on causes me to gain weight. I don’t need to gain weight. I need to lose some. But as I said before, it’s very hard to go out for a run or run over to the gym to get in a workout. I will be honest with you. I do have some very good days where I feel wonderful. But then I have some very, very gloomy days where most of my time is spent in bed, and even getting up to use the bathroom is an Olympic event. Those days come more often than not. Thank goodness for iPads, because I can work in bed, and still be a somewhat productive member of society.

Gone are the days of seeing my regular doctor once a month for a general check-up. Now I have to see a cardiologist, a neurologist, a rheumatologist, an orthopedist, an ophthalmologist, and a gastroenterologist. As you can see, I have a very busy social schedule. Not just the one I envisioned.

I am fortunate to have a small group of beautiful family and friends who live in the remote area to whom I can reach out, and who check on me regularly to see how I’m doing. Let me make this clear. I am not an invalid and can still do some of my daily tasks. Sometimes they take a little bit longer. To those of you who have come to be by my side, called or texted to see how I was doing, and prayed for me daily, I thank you and love you all from the bottom of my heart.

Even if you don't consider yourself a "religious" person, please take a few moments and send me a prayer. Because I have seen with my own eyes the power that prayer can do in someone’s life. Three years ago when I started attending church regularly, I finally found what was missing in my life;

”For God so loved the world, that he gave his only begotten Son, that whoever believes in him should not perish, but have everlasting life.”

John 3:16

To my family, my old friends, and my new friends, I am thankful for every one of you. You must know that, and you must believe that.

Over the last several years, I have been bullied by grown adults, humiliated, misrepresented, and misinterpreted. And these were people who I thought cared about me. I know I am not perfect. I have made many mistakes in my life that I wish I could go back and correct one by one. I cannot, however, I can make up for them by trying to serve as a positive role model to others, helping others in need when I can, being a good and faithful friend, a loving son, an annoying brother, a lovable uncle, and a father figure to the young ones in my life whom I have so much love for. And doing all of this for the glory of God.

So, why a GO FUND ME you ask if you have insurance and a job? That's a very fair question, and I have what I hope is a plausible answer for you. As the title above says, you never know what life will throw your way. You can do your best to be prepared for a minor setback, but nothing can mentally or financially prepare you for the extremely high cost of individual treatments, multiple visits to multiple doctors, prescription medication, some of which are not generic, and the list goes on, and on. For example, one IV treatment or injection is almost $20,000 without insurance. Luckily, my insurance covers a decent part of that amount, but not enough if I want to finish all sessions. Then, of course, there are the follow-up medications. As I stated earlier, there is no cure for this disease, which now has four levels of progression. Unless a miracle occurs, I will have to deal with this for the rest of my life, which means some form of medical treatment that will continue to control the clustering of the Amyloid and stop it from shutting my body down and eventually killing me.

So here I am, swallowing my pride, and doing something that many people have told me that I should've done a long time ago. And that is never to be ashamed to ask for help. Especially in an extreme situation like this.

What will my donation be used for? Every cent will go towards my medical treatments, doctor's visits, prescriptions, and any other medicinal purposes that may arise from this specific diagnosis. Should any funds remain, every cent will be donated towards additional research and development regarding the cure and treatment of this disease. In the fortunate case that we are successful in raising additional funds, those also will be used towards all medical needs. And again, if treatment is no longer needed, or fails to be successful, then all remaining funds will go towards additional research and development on finding a cure for hATTR Amyloidosis.

If you can donate, that is amazing, and I thank you from the bottom of my heart. The amount doesn't matter. Every penny counts. If you are not in a position to donate, I completely understand. But it's always free to pray.

Thank you very much for taking the time to read my story and I will update this page frequently, hopefully with mostly positive reports.

YOU ARE LOVED!