Several years ago, during a routine checkup, Baron’s blood work revealed that he had elevated creatinine levels. He was referred to Duke Medical Center Children’s Nephrology department where they performed a biopsy and discovered that he has a genetic condition call Focal Segmental Glomerulosclerosis (FSGS), which causes scarring of the kidney tissue and both his kidneys are affected. They are not sure what causes this condition, but it often runs in families. Over the next couple of years, he was monitored, and we had hoped that his kidneys would not get worse as he had 60% kidney function and could possibly go the rest of his life without having to go on dialysis or get a transplant. In February of 2019 our worst fears were realized when his bloodwork revealed that his creatinine levels had elevated to a dangerous level. Baron spent 3 days in ICU as they worked to regulate his blood pressure and get him stabilized. Baron has been on dialysis 3 days a week since March of 2019 and that is what is keeping him alive. He is currently going through the process to get placed on the transplant list. Because he is 17, he is still considered pediatric and those patients get put higher on the list. The list is only for deceased donors, so we are praying for a living donor for Baron. Living kidneys tend to last longer than the ones from deceased donors. Baron would have to take anti-rejection drugs for the rest of his life but that is a small price to pay for the chance of a normal life.

Before we discovered his condition and even now, no one would have ever known that Baron was going through all of this. He was an active kid who loved football and had been playing the game since he was 5 years old. He played his last season the fall before he hit his crisis and giving that up has been so hard for Baron. Baron wants to go to college one day and go into sports management. He loves music and has recorded songs with some of his friends. Baron also is a huge Star Wars and Marvel fan. He hopes to go to Disney one day soon and make his own Light Saber at the Star Wars Galaxy Edge Theme Park. Baron has so many hopes and dreams he wants to fulfill in his life. Sadly, the condition he has will remain and a transplant is not a cure. It is likely that Baron will need another kidney one day. Our hope is to raise funds for COTA in honor of Baron, and COTA will support him as he faces unforeseen challenges with this disease.

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.