Help the Burns Family rebuild their life from a Rare illness

Hi my name is Jeremy. I am the founder of Hard Knocks Small Engine Repair, and i'm reaching out to everyone to share my story. My experience is what drives me.

I am hoping to seek help with keeping my family together and getting a new place for us to stay. Then I will focus on my medical and travel expenses to Mayo clinic in Minnesota, so I can enjoy the time I can with my 5 boys, and make more great memories with them while I can still somewhat move. I apologize if it's long, but this is a chance for my family, friends and wonderful customers I have and have had to understand what I have been quietly going through, while still trying to help people. Let me start my journey.

I had a simple Nissan fundoplication in May of 2020, which was to fix my esophagus from all the Gerd and vomiting I was having. From the valve in my stomach, all the way up my throat had been deteriorating over time. Unfortunately, they did it robotically, and when they did it my esophagus was sealed too tight. I had the thickness of a toothpick and was unable to eat or drink, causing me to go in to kidney failure. Kansas University Hospital (KU Med) came to the rescue, and even though it took many procedures and surgeries, they were able to correct it. Honestly, I didn't expect to survive that since it took 7 months for me to recover. But, through God, hope and refusing to give up, I was able to bounce back and get a second chance at things. Within 4 months, I was at 188 pounds, and could do things with my kids, and even return to work. That's when myself and my wife decided to try one last time for a girl. Instead, God granted me 2 more boys. What's the odds of having a singleton, and two sets of twins lol.

That brings me to why I am doing this now. In August of 2021, after I finally had just started getting back to work, I was helping an older gentleman load up his mower, when my right collar bone popped and then protruded from its original position. I went to the hospital, they said everything looked fine, never took any x-rays, and sent me on my way. Fast forward weeks, and then couple months, and my right collar bone was almost double the size. I knew I had an issue. I tired orthopedics locally, they saw no issues, and ended up being referred to KU again.

Thus, a new journey began. I saw orthopedics in Kansas City, and was then sent to a Infectious Disease doctor. I was sent to have a bone biopsy of my right collar bone. They found evidence of Sapho Syndrome. Which is where fluid builds up in the bone causing it to swell, which is incredibly painful. My specimen was then sent to the CDC, due to it being so rare. The odd thing was, I didn't show any other signs or symptoms of this diagnosis. So they couldn't confirm for sure. Fast forward to now. I have seen orthopedics, neurospine, rheumatology, pain managment, etc and have had test after test and med after med, trying to see what it is, with no luck. What started as one issue, spread to many, from my bones to joints. Any immune system I had, was destroyed trying to pin point what I had. I even told the doctors, at this point use me for a learning tool to help others in the future. They have never seen anything like it and said my only hope was Mayo Clinic.

Whatever I have, has attacked my bones and joints to the point that my joints are hardening, making it harder and harder to move, and also causing joints to pop out of place, and random areas around my bones to continue to swell. I will be going to Mayo Clinic in Jacksonville, Florida in a week as a last ditch effort to slow down, or stop whatever this is. But the fact I can no longer work, do activities with my kids, let alone even hold my babies, shows the levels this has spread. I am thankful everyday that I have incredibly high pain tolerance, because I can only imagine what this pain must feel like to others and I hope if they find answers from me they can use it to help others.

When the doctors tell you that "Cancer would be a better option for you to have because at least there are treatments or pain options", that quote on its own carries a lot of weight. I am kept on two blood pressure medications, and still have an average blood pressue around 200/120, due to all the pain. So if this internal issue doesn't get me first, the pain will.

I was smart, and had saved up some money for emergencies, but in August of 2022, we had a drunk driver plow through our business. So between insurance not helping us, and the individual who hit our business being a local lawyer, we couldn't find anybody that would take the case due to conflict. I have had to use what I had saved, to keep the business running.

I refuse to give up and accept defeat, when I still want to have time with my wife and kids. I have spent my life showing everyone that you should never give up no matter how hard or tough anything is. I smile everyday, whether it's at work, with my kids, or no matter what I am doing, to show my kids and everyone to not let anything take you down. To keep up your hope, faith, and strength, maybe you can help and drive someone else who is going through their own battles.

I don't know what paths I will have in the future, but I know I can no longer work and help the customers like I used to. I feel as though I do have to apologize because I did keep my suffering to myself and not let my friends, family or customers know that anything was going on. Let alone the severity. I have always wanted to help people no matter what it was. If it was as simple as fixing there item, listening to there problems, giving them advice, or honestly, giving them the shirt off my back, as my grandfather taught me, then that is what made me happy. I have made mistakes like everyone, but I have tried to be genuine and help others, even if it cost me my own well being at times.

I am proud and honored to have known and worked with so many different people over the years. I have had incredible customers and bonds that I have built over many years repairing equipment in kansas, working in retail, or even my time in the army. I am thankful for every connection I have made.

I feel bad for my family who have all had to suffer so much the last couple years and grow up a lot quicker then they should have, but I am proud of them for who they are now and will continue to be proud of them.

Finally to all my customers that I have had the pleasure to help for all these years. It has truly been an honor to know and work with all of you. I remember the names and the faces, the happy, and even the grumpy. At the end of the day, the people were a big reason I kept wanting to work, even with my pain. The shop will remain even if I leave Royce at the helm.

Thank you for reading my story and I hope it helps people in some way. I appreciate any and all donations I get. Thank you again!