Rare Disease and Liver Transplant Warrior

The story of Cameron

Our son Cameron was born a seemingly healthy baby on November 4, 2022. After two days in the hospital, we were sent home with him to begin our life as a family of four. We were so excited for him to meet his big sister Callie, and enjoy a special night with him at home. The next morning Cameron became lethargic, had labored breathing, and low body temperatures. Due to these sudden changes we decided to rush Cameron’s to the emergency room.

Cameron’s condition quickly began to worsen and the medical team was a loss as to why this was happening to him. Although rare, they decided to test his blood levels for ammonia, which came back as highly elevated. Cameron was immediately rushed to Children’s Hospital of Atlanta Egleston and put on dialysis to remove the toxic levels of ammonia from his tiny body. Genetic testing showed he had a metabolic disease called ornithine transcarbamylase deficiency, a genetic disorder that prevents the breakdown and excretion of ammonia. It is in the family of urea cycle disorders If left untreated, the condition leads to brain damage, coma, and death.

For the next three weeks, Cameron fought for his life. Testing determined that Cameron’s father and myself are not genetic carriers of the disease and that his condition was an unfortunate random mutation called De Novo. His ammonia was eventually stabilized, and Cameron was placed on a strict metabolic diet and ammonia scavenger medication to manage his disease. After 36 days in the NICU Cameron was finally able to come home. We worked closely with a team of geneticists and metabolic dietitians while he waited for a life saving liver transplant.

Over the next 11 months, Cameron was hospitalized 15 times for hyperammonimia. His disease made him very sickly, and many things including colds, viruses, infections, diet, and more could trigger his condition. Cameron endured a lot during his first year of life, but he was truly resilient and strong during the medical trials he faced.

As Cameron’s condition became more difficult to manage, our family decided to pursue listing cameron at another medical center. We came to Monroe Carell Jr. Children’s hospital at Vanderbilt in the fall of 2023 once we learned that the hospital offered living donor liver transplantation as a surgical option. After evaluations for myself and Cameron, it was determined that I, his mother, was the perfect liver match for Cameron.

On January 4, 2024 our surgeries were performed and I was able to give my son the gift of life by donating 20% of my liver to him. Our surgeries went beautifully, and Cameron did an amazing job receiving his liver transplant. His rare disease was cured, and Cameron was discharged after only 8 days! His recovery has been miraculous, and we are so grateful for the rare disease and liver transplant medical teams that worked so hard to save our son’s life.

Although Cameron no longer lives with a rare disease, his journey has truly made our family stronger. Cameron’s story is one of hope and resilience, and he will always be our rare disease and liver transplant warrior!