Kody's Story
Kody Joseph Churma was a healthy young man and suddenly was diagnosed with the chronic illness Scleroderma in May of 2017. From that point he had battled this illness daily while it slowly took over his body. Since 2017 he lost almost all mobility in his hands, wrists, some in his legs causing him difficulty to even walk. Extreme levels of tightening in all areas of his body making eating, sleeping and even getting up out of a chair extremely difficult.
When someone is diagnosed with Scleroderma there are a number of issues that could come along with that disease which makes it that much harder to fight and live a normal daily life. Kody had also had a condition called Raynaud's, which is poor circulation of blood going to the hands and feet along with always being cold. He was unable to do the things he loved the most such as camping, hiking, fishing, hunting, drawing, and just maybe skateboarding again.
Kody had undergone many different types of treatments. Phototherapy was the first where he stood in a chamber that resembled a tanning bed and would get light therapy that would try to trick his body to stop over producing collagen. After a couple months of this treatment, the doctors said that this disease was progressing faster than they thought and needed to try a stronger method to slow the process down.
The second type of treatment Kody tried was ECP therapy (Extracorporeal Photopheresis) which is similar to dialysis but instead of cleaning the kidneys this machine treated his blood. Approximately 15% of the patients blood would be removed and the white blood cells would be separated, treated and exposed to a UVA light to promote death of the diseased cells. The treated white blood cells would then be returned to the patient. The theory states that the immune system would then recognize the dying abnormal cells and begin to produce healthy lymphocytes to fight against those cells. He would go to the hospital for these treatments that lasted about for 6 hours every visit. Unfortunately, the disease was still progressing faster so then he once again needed to start a more aggressive treatment in order to get this disease under control.
In early 2018 Kody started to suffer from another disease that will sometimes show up when battling Scleroderma. His muscles started to weakened and he had to have a muscle biopsy that was a very invasive and painful test. He was diagnosed with muscle myositis. Kody slowly became more weak and while getting around was already difficult to begin with this just made it a lot harder!
From then the disease continued to accelerate at a rapid rate. He began another treatment to get the inflammation under control that had started to take over his entire body in June of 2018. After the first round of chemotherapy treatments, Kody felt amazing. He was up and running around everyday. He said he was feeling better and was excited about his recovery and doing different things including the simple things in life like laying down to sleep, walking up and down steps, and eating were just a few. After about 3 weeks he started to feel worse and had to start his second round of chemotherapy treatments. So in July 2018 and after just one day of his treatment Kody was rushed to the hospital the following morning.
Kody's hospital stay was not a pleasant one. The first 72 hours were very hard as Kody was put on a ventilator and no one was sure that Kody would make it. By some chance of a miracle he pulled through every obstacle that he was faced with like high blood pressure, collapsing heart, lungs filling with fluid, dialysis, and brain damage, etc... At the beginning he kept going in and out of consciousness and all he would say, "this is bad," and "I want better." Kody woke up and showed no signs of brain damage and began to recover beautifully.
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After 14 days, Kody was told that he could go home the next day! Unfortunately, he then took a turn for the worse. Kody battled one issue after another after another and another... He had to be placed back on a ventilator because pneumonia developed and his lungs started to fill with fluid again. Then he suffered a GI bleed and had to under go surgery to have the bleeds repaired. Soon after that he suffered another GI issue and was put on a ventilator for the third time. He decided to undergo surgery to have a tracheotomy placed to better his chance of survival. Kody made it through the surgery and was recovering. Days later Kody ran into complications.
Kody passed away on September 4, 2018 at 2:14 in the afternoon.
Kody talked about starting a foundation once he was able to come home. He did not want others to have to go through this disease alone or without information like our family did. He wanted to share his story, educate others (including medical staff), help provide aid in early diagnosis and help by just sharing and teaching about this HORRIBLE illness.
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While Kody is no longer here with us on earth, our family is going to carry out Kody's final wishes to help others who have this illness and the family and friends of loved ones by educating them and offering a support system. He wanted to bring awareness about Scleroderma and find ways to have us screened annually with a blood test (ANA Screen) that can detect approximately 150 autoantibodies in various autoimmune diseases. This is very important because early detection is crucial.
Our family NEVER left Kody's side during the 54 days he was hospitalized, therefore we learned how many doctors, nurses and other staff have never even heard of or knew very little about this illness. There needs to be more time dedicated to learn about the illnesses classified as autoimmune diseases because they are overlooked and kept in the grey area of medicine.
Kody is now resting, at peace and, no longer in pain. While our lives are absolutely shattered and we wish our Kody could be here with us today, we know he's watching over us and is proud that we are starting this foundation in his honor. They say the good die young, and they were right. Anyone that knew Kody knew he loved life, loved this beautiful earth, and LOVED his family and friends. He truly understood the meaning of life and lived a simple one everyday even with all of his struggles. He knew that money and materialistic things did not matter, but friends and family did. He made sure that each person he was close with knew that they were loved and boy was he loved in return!!! Send us your photos or a special memory that we can post because you are all part of his story. We ask for you help so we can continue Kody's fight! We will always be a family of FIVE!
Thank you for reading our Kody's story.
With much love,
Kody's Family
