Charlie was born on February 25, 2011, in Lansing, Michigan—the youngest of five grandsons. From the very beginning, he was full of life. He reached milestones quickly—talking, walking, and potty training earlier than his cousins. He was healthy, vibrant, and incredibly charming.
At age two, Charlie had his first seizure. At the time, doctors weren’t overly concerned. But the seizures kept coming—growing in frequency and variety, including terrifying drop seizures. After nearly two years of uncertainty and searching for answers, Charlie was diagnosed with Lennox-Gastaut Syndrome (LGS)—a severe and rare form of epilepsy.
He began treatment at the University of Michigan before transitioning to the care of Dr. Jules Constantinou—lovingly known as “Dr. C”—at Henry Ford Hospital in Detroit. Dr. C has become more than a neurologist to Charlie’s family. He’s their “Patch Adams,” bringing compassion and humor alongside world-class care.
But LGS does not relent. Over time, Charlie lost his mobility and now uses a wheelchair. He is severely cognitively impaired and developed an oral intolerance to food and medication. Today, he receives all medications (seven, three times a day) and nutrition through a feeding tube. Despite these challenges, he attends school and is surrounded by a team of caring supporters who help him live fully in the present.
Financially, the toll was almost too great. The family nearly faced bankruptcy before finally receiving support through Medicaid disability. Along the way, Charlie battled pneumonia twice and, during one of those episodes, doctors discovered a large, unidentified mass in his lung. It looked serious—possibly cancerous. Surgery was scheduled.
But then, something unexplainable happened.
The day before surgery, the surgeon called Charlie’s parents. A new scan had come in, and the mass was gone. Completely vanished. There was no medical explanation. The surgeon could only say, “It’s a miracle.”
And Charlie is just that—a miracle.
Despite scoliosis and another surgery ahead, he remains a joyful child. His light shines brightly, inspiring everyone around him to see life through a new lens. Charlie lives entirely in the now, and perhaps that’s his greatest gift.
His older brother, Desmond, now almost 21, has been a constant source of love and support. Desmond’s bond with Charlie has shaped him in extraordinary ways. When he was a sophomore in high school, Desmond gave a presentation about LGS to his class. To help his classmates grasp the rarity of the condition, he pointed across the street to the University of Michigan’s football stadium—home to over 110,000 fans—and said:
“Statistically, not one person in that entire stadium would have LGS. That’s how rare my brother’s condition is.”
The message left a lasting impact.
For Charlie’s family, this story is more than a medical journey. It’s a story of hope, love, strength, and the everyday miracles found in the most unexpected places.
“Either everything is a miracle, or nothing is. We believe that Charlie is a miracle.”
-Written and submitted by: Charlie’s grandfather, Roger
Updated 08/01/25 (KK)