COTA for Annabelle Rae

Our Story

Annabelle Rae was born on 2/19/19 in St. Augustine, FL at 39 weeks. A few hours after birth, she was admitted to the NICU for respiratory distress. It was thought that Annabelle had immature lungs which are sometimes seen in newborns. She was placed on a conventional ventilator on her third day of life and on her fourth day she was transferred to UF Health in Jacksonville, FL. After treatment for immature lungs, the doctors were not seeing any improvement. She stayed in Jacksonville for 12 days and the doctors suspected she had a type of Interstitial Lung Disease. They sent off genetic testing that would hopefully give us insight to why our daughter was unable to breathe on her own. The test that was sent tested for over twenty genetic disorders but the expected wait time for the results was 26 days. During that time Annabelle was transferred to her 3^rd hospital, UF Shands Children’s Hospital in Gainesville, FL.  While in Gainesville, Annabelle was switched from a conventional ventilator to a high frequency ventilator that was gentler on her lungs but considered a higher level of care. On March 26^th we received the preliminary results and Annabelle was diagnosed with ABCA3 deficiency. The ABCA3 gene helps to make surfactant for your lungs. Without surfactant the tissue that surrounds the air sacs in your lungs stick together. With this diagnosis the only cure is a lung transplant. Annabelle was transferred to her 4^th hospital St. Louis Children’s Hospital in St. Louis, MO for transplant evaluation on 4/15/19. On 4/26/19 Annabelle was officially listed and has been awaiting a transplant since that time. Annabelle’s Father (Justin Williams) and older sister (Madison, 1 yo) are still living in St. Augustine  and visiting as often as they can, while her Mother (Christen Williams) is staying in St. Louis with Annabelle. Once Annabelle has the transplant, she is required to stay in St. Louis for a minimum of 3 months post-transplant for follow up appointments and care before they can move back home.