Help Kenzye Thrive with Liver Transplant Care

WE GOT LIVER TRANSPLANT ON 9/28/24!

We will have to stay in hospital for 14 days then stay next to Texas Childen's Hospital for at least a month!

Our story started when Kenzye was born over 16 years ago. She was sent to the NICU due to her blood sugar level being 12. The NICU nurses laughed, saying she was the biggest premature baby they had 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 feeling unwell keep her down. She enjoyed dancing, competition dances, theatre at school, helping teach students at the dance studio, and a few clubs at her school. Since April 2024, Kenzye has been homeschooled.

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, 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 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.

Transplant is a lifetime medical and non-medical Treatment.

Medical costs include:

• Insurance deductibles
• Insurance co-pays
• Fees for surgeons, physicians, radiologist, anesthesiologist and lab tests
• Surgery
• Follow-up care and testing
• Additional hospital stays for complications
• Anti-rejection and other drugs, which can easily exceed $2,500 per month
• Rehabilitation

When planning for a transplant, it’s also important to take into consideration potential non-medical costs.

Non-medical costs could include:

• Food, lodging and long distance phone calls for you and your family
• Transportation, to and from your transplant center, before and after your transplant
• Lost wages if your employer does not pay for the time you or a family member spends away from work

This journey will come with many challenges, emotionally, physically, and financially. Medical bills, time away from work, travel, and the care needed for Kenzye will place a tremendous strain on the family. That’s why we are humbly asking for your support. Any contribution, big or small, will help ease the financial burden for long term medical needs for Kenzye.