COTA for DJ's Journey

Our Story

Meet DJ. He was diagnosed with a rare kidney protein spilling disease, called Nephrotic Syndrome, in April 2022 at 16 years old. He had been progressively gaining weight, and swelling all over his body. Two emergency room visits and a week-long hospital stay later, his family had their lives turned upside down. During the visit, DJ had a kidney biopsy, confirming a diagnosis of Minimal Change Disease, Nephrotic Syndrome. This means that the kidneys filter protein into the urine, making it hard to have enough protein to carry fluid away from the cells of his body. This causes excess swelling, which can wreak havoc on the body, leading to complications such as high blood pressure, difficulty walking, exhaustion, and difficulty breathing, among other things. He was given fluid retention medicine called Lasix through an IV, given protein infusions, and placed on a very restricted low-sodium diet. He went home on steroids, the low-sodium diet, and fluid restrictions to reduce the swelling.

His life changed dramatically almost overnight, with multiple new medications, 14 separate hospital stays, and changes in how he attended school. All of this took its toll, resulting in losses of friendships and routines while learning how to live with his new reality. In addition, the treatment of the syndrome itself has caused medical trauma, violating his dignity; however, he puts on a brave face for everyone. Nurses love him because he has such a gentle way about him, which is just one of his many likable qualities. Through all of this, though, he demonstrated his quality. DJ has shown admirable strength and tremendous grace in the face of adversity. He doesn’t feel sorry for himself and faces every new challenge with determination and optimism.

Obviously, this hasn’t been easy on him mentally or emotionally. The strain has affected him deeply, yet he tries to focus on hope for the future.

DJ has so much ambition and so many incredible gifts that he needs to share with the world. He is starting college to help families like ours traverse this horrible disease as a kidney specialist. His unique perspective will change the lives of millions of fellow warriors. He is amazingly smart, compassionate, and empathetic with a huge heart to give all the love the world can handle.

The next step in DJ’s journey is a kidney transplant. Given how young he is, he will require multiple transplants throughout his life, including lifesaving anti-rejection medications, transplant-related follow ups, and unavoidable health consequences, in addition to any other medical surprises that may appear on this long journey, all which require funding.

Joining forces with COTA will help defray transplant-related costs. When you donate to COTA in DJ’s honor, you will help COTA to provide financial assistance not only for this current transplant, but as a safety net for him throughout his life. COTA funds will provide assistance with transplant-related expenses like medical bills, lost wage assistance, health insurance deductible assistance, and more. All donations to COTA in honor of DJ, no matter how big or small, will meaningfully impact this amazing young man’s life. 

Please share, share, share DJ’s story, and search your heart to contribute to COTA in honor of this young man’s future!

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.