The Hayton family has fought to understand the nature of our kidney disease for many years. The disease has impacted multiple generations, with 10 transplants in the family since 1977. I was diagnosed with stage 2 kidney disease in 2015, at the age of 23. By 2020 my illness had already gotten to the point where I needed a kidney transplant or dialysis to continue living. Fortunately, my wonderful wife stepped up to donate an almost perfectly matched kidney.
2020 turned out to be a year of hope for my family: we also learned from Dr. Bleyer's team that there was a name for the kidney disease that affected me and many others across multiple generations (MUC1). Not only that, at the same time I learned that there was a potential treatment under investigation, and that would mean my children would never have to go through the same illness as I did. It is an incredible feeling to finally make the connection to Dr. Bleyer and the Rare Kidney Disease Foundation. My goal is now to help other families feel the same hope as mine