Luke’s Story
The inspiration behind Luke's House for Behavioral Health stems from the life of a young man named Luke, affectionately known as “Lukey.” Born with a rare genetic disorder that currently has no cure and a life expectancy of just 10 to 20 years, Luke’s journey was marked by numerous challenges. These challenges impacted his mood, behavior, physical health, education, social life, and family, as well as his access to critical resources and support. Luke's story fuels our commitment to providing compassionate, comprehensive care.
Luke’s story is a testament to the extraordinary power of love. It would be incomplete without honoring the unwavering dedication of his caregivers, family, and community, whose love never wavered, even in the face of overwhelming challenges. Despite the odds stacked against him, research shows that the boundless love and support from those closest to a person can profoundly impact both the quality and length of life, especially for those battling emotional, mental, behavioral, or medical struggles.
Luke defied every expectation, living to 32 years—far surpassing his life expectancy—proving that love, in its purest form, has the power to heal, sustain, and create miracles.
Every Hand Held Tells a Story
World Sanfilippo Awareness Day is dedicated to spreading awareness and sparking conversations around the globe about Sanfilippo Syndrome—a rare and devastating disease that few people have ever heard of.
This special day honors the children around the world currently living with Sanfilippo Syndrome, as well as the children who have passed away. Their lives matter, and their stories deserve to be seen, remembered, and shared.
World Sanfilippo Awareness Day also honors the families of these precious children. Families who love fiercely, advocate tirelessly, and face unimaginable challenges with strength and grace.
The awareness logo, depicting a parent and child holding hands, represents the powerful and unbreakable bond between parent and child. Any parent can relate to the tender years when your child’s hand fits perfectly in yours—but for families affected by Sanfilippo Syndrome, this image carries deeper meaning. It symbolizes the fleeting nature of those precious moments and the profound love that never fades.
Together, through awareness, remembrance, and conversation, we can ensure that children with Sanfilippo Syndrome—and the families who love them—are never forgotten.