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. I have never been so devastated in my life, but all of a sudden, every single thing about Shep that I questioned made complete sense. His thick hair and eyebrows no one could place, his speech delays, his disregard for physical pain, his general clumsiness, impulsivity and fearlessness, his frequent behavior reports from school, the way his sweet belly pokes out, his month-long NICU stay—all now sadly made complete sense.

The road ahead of us will not be an easy one. There is complete uncertainty right now in regard to potential treatment for Shep, between clinical trials or a pending FDA-approved gene therapy. For now we wait but unfortunately Sanfilippo doesn’t. We are committed to traveling far and wide to access any opportunity we can provide for Shep. We are prepared for Shep's care to evolve and change over the years. We want to provide the absolute best opportunities possible for him. Funds raised will help cover medical care, treatment, travel for treatment, and support for sitters and aides at school as Shep's needs change. We are so grateful for any support, whether through donations or sharing our story. Thank you for standing with our family during this uncertain and devastating time.