Walter—known to all as Wally—is one of the kindest, purest souls you will ever meet. His laugh once filled every room with bright, contagious joy. He was all giggles, hugs, and boundless curiosity. But everything changed when Wally was diagnosed with a rare genetic disorder linked to mutations in the SCN1A gene, causing Dravet syndrome—a severe form of epilepsy that begins in infancy.
Dravet syndrome is a rare, lifelong epileptic encephalopathy characterized by frequent, prolonged seizures, developmental delays, and increased risk of sudden unexplained death in epilepsy. According to the Epilepsy Foundation, children with Dravet syndrome often experience seizures triggered by fever or other illnesses, along with cognitive and motor impairments that profoundly affect quality of life.
Wally’s vibrant spirit grew quiet. Once lively and engaged, he became withdrawn and unresponsive. His parents lived in constant fear—worried that his seizures were causing strokes, and terrified that time was slipping away.
The only medical center with the expertise to treat Wally’s complex condition was Children’s Hospital of Philadelphia (CHOP), thousands of miles from their home. His mother shared, “How do you drop everything and fly across the country when you’re already drowning in fear, mounting medical bills, and uncertainty?”
That’s when they found Miracle Flights.
“I remember the day I spoke with Jessica from Miracle Flights,” Wally’s mom recalls. “We were overwhelmed by a rare and frightening diagnosis. She walked me through every step. In that moment of despair, she gave us something we hadn’t felt in months—hope.”
Thanks to Miracle Flights, Wally and his family were able to travel to CHOP without the crushing financial burden. Flights, transportation to and from airports—even a professional chauffeur who treated the children with gentleness and kindness—everything was provided and managed.
“No parent should ever have to choose between paying rent and getting life-saving care for their child,” Wally’s parents say. “Because of Miracle Flights, we never had to.”
Since beginning treatment, Wally has shown remarkable progress. His seizures are better controlled. His smile is returning. He is engaging with the world around him once more, laughing and playing like the boy he was meant to be.
His mother says, “For the first time since his diagnosis, we have a plan. We have peace. And we have hope.”
For Wally and his family, hope is the greatest miracle of all.
