For those whom we may not have met, I'd like to start by introducing our family. My name is Lilli and my wonderful fiancé is Ross. Together we share two of the most beautiful daughters, Eloise and Josephine. Eloise “Ellie” is every bit of two years old and keeps us on our toes. Josephine “Josie” is the sweetest, snuggliest baby doll at six months old.

Josie has endured more than any baby should and her story has just begun. On February 2nd, 2026, we received a call no parent should ever receive. Our precious baby girl was diagnosed with Cockayne Syndrome type 2, or CSB depending on the literature you find. Cockayne Syndrome is an incredibly rare, fatal genetic disorder. Children with type 2 have an average life expectancy of 5-7 years old due to rapid neurodegeneration and systemic issues. While there is no cure at this time, that doesn't mean there is no hope for Josie and for other children with this devastating diagnosis.

With the unimaginable becoming our reality and our lives, we need your help. Researchers are actively working to develop a treatment but have a long way to go. We will make every effort possible to ensure this research receives the necessary funding to not only give life to our precious girl but also children across the globe.

In addition to funding research, we want to ensure Josie receives any and all that she needs to support her. Our young family is supported on a single income as Ross works full-time and I am the full-time caregiver to our girls. While nothing will make this situation better, adding a financial strain makes things that much harder. In time, we will need to make our home more accommodating to Josie's needs as well as provide things that insurance will not cover such as a vehicle, travel expenses, and the resources required to provide lasting memories with our girls.

Please consider helping to support our family and most of all our sweet girl. With no amount too small, every donation will mean more than you know.