COTA for Kennedy Rose

Our Story

Kennedy, a remarkable and resilient 8-year-old girl, faced a series of health challenges from birth. Her bilirubin levels failed to decrease, and other indicators pointed to an undefined issue. Following genetic testing, Kennedy was diagnosed with the rare genetic liver disease, PFIC 4, at 6-7 weeks of age. The road to diagnosis was challenging, and managing the symptoms with medication proved to be temporary solutions. In 2023, Kennedy’s hearing loss was linked to her liver condition, and despite efforts to address it, the itching remained so unbearable she wasn’t even able to wear her hearing aids. The discovery of liver lesions two years ago led to liver biopsies, ruling out cancer but highlighting the growing concern of lesion management. As Kennedy’s health continued to deteriorate, a liver transplant became imperative. Following a short wait of approximately two months on the transplant list, a matching liver became available on Mother’s Day in 2024. Kennedy is currently coping with post-transplant complications, and we hope to see progress soon, leading to her return home.

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.