On March 20th, 2026, Elizabeth arrived at the hospital ready to meet her sweet little baby girl, Luna. Soon after Luna’s arrival, she was brought to the NICU for monitoring due to multiple concerns regarding her health. A few short hours later, Elizabeth’s world was flipped upside down when she was informed that Luna needed to be transported via helicopter to MUSC, a two hour drive from there, for further evaluation and monitoring. This led to a hospital stay for Luna, lasting almost two weeks before she was transferred back to the hospital where she was born. On April 12th, 2026, after a few short days at home, Luna was readmitted to the hospital for a viral infection and difficulty eating/breathing.

Luna has endured so much in this short period of time, and now Elizabeth is currently facing every parent’s worst nightmare…

On April 9th, 2026 the results came back from Luna’s genetic testing, indicating that Luna has an EXTREMELY rare genetic disorder called KAT6A.

KAT6A syndrome is a rare, multi-system genetic condition caused by a mutation in the KAT6A gene. It affects multiple areas of the body, including neurological development, muscle tone, feeding/GI, and the heart. Children with KAT6A often experience developmental delays, intellectual disabilities, significant speech delays (many are non-verbal), and hypotonia (low muscle tone). It can also present with feeding difficulties, congenital heart defects, and other complex medical needs that require ongoing, specialized care.

In Luna’s case, this condition occurred spontaneously (de novo), meaning it was not inherited and could not have been prevented. While this diagnosis has been heartbreaking, it has also brought clarity by giving an explanation for the many medical challenges she has faced since birth, and will help guide the path forward for her care.

Luna requires specialized medical care from experts familiar with KAT6A, including those at Boston Children’s Hospital and their new KAT6 clinic. Getting her the care she needs involves ongoing travel, time away from home, and significant logistical challenges as Elizabeth prioritizes Luna’s health above everything else.

As she focuses on staying strong for both of her girls, the financial burden of this journey is quickly snowballing. Some of these unanticipated expenses include:

* Flights/transportation expenses

* Hotel stays during hospital visits

* Rental car fees

* Meals while away from home

* Medical-related expenses not fully covered

If you have had the pleasure of getting to know Elizabeth, you would know that she would never ask for help herself — but right now she needs her community to stand beside her more than ever.

This fundraiser is to help relieve the financial stress so she can focus entirely on what matters most: being there for Luna during her care, and continuing to support Paisley’s needs.

Every donation, no matter the amount, will make a meaningful difference. If you’re unable to give, sharing this page helps more than you know.

Thank you for your kindness, generosity, and support