On April 17, 2026, after months of genetic testing, we learned that our son Shep tested positive for a rare genetic disorder called Sanfilippo Syndrome (MPS-IIIA). My giggly, affectionate, wild, 2-year-old baby boy that I felt like I knew everything about had suddenly been living with a terminal syndrome. More simply put, Shep lacks an enzyme that breaks down cellular waste. This waste is building up in his brain cells and will eventually reach toxic levels, destroying his brain over time. We are told this will result in major regression throughout his life and reduce his life expectancy to his teens. Our family is in a huge period of waiting and hope between a pending FDA approval for a gene therapy treatment and the possibility of a clinical trial. While we wait, Team Sheppy is committed to raising awareness and continuing to advocate and educate about Sanflippo Syndrome. All funds collected will be distributed between funding research and implementing projects for inclusivity in our Lafayette community for kids like Sheppy! We want to thank everyone for the outpouring love, support, and prayers we have received.

With Love,

Caleb, Natalie, Ami, & Shep