Chronic kidney disease, GFR rate, creatinine levels, anemia, end stage renal failure, life saving dialysis, transplant. These are some of the terms we would come to know within twenty four hours. Twenty four hours to have the world come crashing down, only to have to pick it back up again with all the strength, you never knew you had. Suddenly our sole purpose was to be strong for the scared and confused 14-year-old boy sitting in a hospital bed. Ryder, a silly, funny, creative, loving, and truly dynamic young man, whose medical journey began a mere three months ago, has become the bravest kid we know, our hero. In fact he saved his own life. 

Three months ago, as far as we knew, Ryder was happy and healthy. Like most 14-year-olds, he enjoyed playing video games, pranking his family, and playing with his dogs. Other than adjusting to the new normal that is COVID, things were okay, good even. His biggest worry was whether or not he was able to log into his Zoom class. Then, on a typical Sunday evening, Ryder made an observation that would set us on an inconceivable new path. While getting ready for bed, he noticed his knees looked a bit different, a bit wider than normal. We promptly made a doctor’s appointment for the next day, where we were assured it was nothing abnormal. The doctor felt Ryder knew his body best, but suggested we run a few tests, just in case. 

The next morning, as Ryder was getting ready for school we received a phone call, the phone call that changed everything. We were instructed to pack a bag and head to the hospital. They had detected a problem with Ryders kidneys. It’s an indescribable feeling, trying to suppress sheer panic, all while trying to reassure your child. After hours of poking and prodding, we met with a panel of doctors. They asked questions about his diet, pain, and other habits. There were no symptoms they could detect. Nothing was adding up, and yet his numbers didn’t lie. It was all completely surreal, unthinkable: only because Ryder had noticed a small difference in his knees, was he able to save his own life. 

The following morning we would come to know that Ryder’s kidneys were failing, and were only functioning at eleven percent. The most disheartening part: none of the doctors knew why. After a grueling week in the hospital, Ryder’s numbers were stable enough for him to finally come home. Since then, Ryder has been placed on peritoneal dialysis, and along with a constant stream of medications and lab work, the strain on his kidneys has been somewhat lifted. 

Despite the onslaught of appointments, medical information, and day to day hardships, there is real hope: a kidney transplant. Ryder will have doctor’s appointments, medication, and monitoring for the rest of this life, but with a transplant, he would be able to return to a more normal quality of life. 

Even on a good day, there is so much to see to, and on a bad day, things seem hopeless. Despite having to face a diagnosis that no 14-year-old should have to face, Ryder has been truly amazing. He is still so goofy, loving, and so much fun to be with. He is our constant reminder of what strength in the face of adversity looks like. 

We know that with a diagnosis like this, it truly does take a village. We are blessed to have the support of all of our friends and family, especially his inner circle. His uncle and aunt who are always there to make him laugh, and his grandparents who have been there every step of the way and try to lift as many of the daily burdens as possible. As close as we were before, this has bought us closer. Forever changed, forever strong, forever #TeamRyder.

About COTA

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.