February 28th 2026. In years past February was always just another month to us. Today would have been like any other day. In 2025 that changed forever. “Your son has a 1 in 1 million genetic condition called Sandhoff Disease”. Our lives as we knew it were forever changed. That’s all it took to become part of the rare community. The reality is rare disease are not that rare. 1 in 10 people have a rare disease.

As we look around social media today we are filled with gratitude and happiness seeing families from all over share what Rare means to them. Friends, community, and family have come together to share memories, hope, and awareness. Our special boy Aiden has appeared in several posts along with friends we have made along our journey.

Rare Matters.

Being a rare family has taught us so much. Aiden taught us so much. His life was deeply meaningful. His legacy lives on through us. Aiden was more than a rare disease. He was our son, a brother, and a sweet little stinker man. Everyone that met him loved him. We will advocate today and every day after that for his story to be heard. We love you sunshine boy.