When I was diagnosed, I was terrified. I was young so I did not really know what was going on, besides the fact that I am sick, and I am not going to get better. All I really remember is being scared and seeing my parents so scared and hurting. The hardest part about going into kidney failure back in 2017 was having to go on prednisone because that took a good portion of my childhood away.
I am a 17-year-old high school junior from New Hill, NC. I love all things Disney, Grey’s Anatomy, Criminal Minds, dancing and hanging out with friends. I would like to be an FBI profiler someday.
I was diagnosed with IgA Nephropathy at age eight. When I was 13 years old, my kidneys started their downward spiral. I went into nephrotic syndrome and was treatment resistant after trying a variety of medications. At the age of 16, I went into remission and my kidneys are now doing great.
Having this disease has not been easy. There have been a lot of ups and downs like going on prednisone, and the constant doctors’ appointments, but it has taught me a lot about not taking anything for granted. I have learned how valuable people and things can be, and to cherish every moment in life.
I am a fighter and am determined to make changes. Together with my mom Carrie, I have been to Washington, DC, to speak with senators and representatives about codifying the Living Donor Protection Act into law as well as get funding and support for the new research program Kidney X. I love advocating for myself and others with this disease.
In the future I really hope there is a cure. Finding a cure to this disease will not be easy and it will take time, but I hope that eventually there will be one. Even if the cure is not around during my lifetime, I hope it will be in the future because I do not want other kids to have to go through the things I have been through in my past. During my lifetime, I hope there is a treatment that can prevent me from needing a kidney transplant. It is a big goal but hopefully there will be a treatment available to patients that can prevent transplants due to this disease.