COTA for Kenzye's Journey

Our Story

Our story started when Kenzye was born over 16 years ago. She was sent to NICU due to her blood sugar level being 12. The NICU nurses laughed saying she was the Biggest Premature baby they have seen being born at 35 weeks and weighing almost 8 lbs. She would spend the next 15 years in and out of doctors’ appointments, labs, and tests to figure out why she was sick constantly. She never let her feeling unwell keep her down. She enjoyed dancing, competition dances, theatre at school, helping teach students at the dance studio, and clubs at her school. Her smile and personality can light up the room, and her dancing can tell a story and make you cry. We finally got the answers in July 2023 on what has caused her to be sick since she was born.

After accidentally finding spots on her liver during a CT scan a few years ago, we scheduled an appointment with a Pediatric Liver Doctor at Texas Children’s Hospital in Houston, Texas. After more tests were ordered, we were sent for Genetic testing. There is where we found out Kenzye was born with a very rare genetic mutation Hepatic Nuclear Factor 1 Alpha (HNF1A) Maturity-onset diabetes of the young (MODY). It is the HNF1A-MODY-3 Diabetes. This also involves the Liver development and function, and causes tumor growth. It was discovered Kenzye has innumerable hepatocellular adenomas (HCAs), benign liver tumors. The only option is a Liver Transplant. It is extremely rare for someone this young to have so many hepatic adenomas in a liver. Doctors are learning and teaching others about this rare form of Diabetes and the even more rare hepatocellular adenomas. 

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.