Meet Our Champions

Soon after his birth at Corewell Health William Beaumont University Hospital, Max’s parents noticed he was weaker than his siblings had been at the same age. Early diagnoses included hypotonia, torticollis, and plagiocephaly, but the cause remained unknown. After years of testing, a pediatric geneticist finally identified the reason: an ultra-rare condition called childhood-onset de novo spastic paraplegia type 4 (SPG4), a genetic mutation seen in only 23 patients worldwide. The condition causes stiffness in Max’s limbs and significant challenges with speech and cognition. Now in a special education preschool, Max uses an AAC device for communication, ankle-foot orthoses, and is learning to use a wheelchair. He receives physical therapy, enjoys hippotherapy, and loves riding the custom bike that lets him join his siblings, Maddie and Alex, around the neighborhood. Through every challenge, Max’s resilience and joyful spirit continue to inspire everyone around him.