The star of Floral Park Memorial High School’s prom matched a black jacket with a Batman T-shirt, and sported sneakers with red shoe laces and soles that lit up when he walked.
Ethan Demmers, 5, wasn’t inside Jericho’s Milleridge Inn for 5 seconds before teacher Christin Mason scooped him up.
“Are you my prom date tonight?” she kidded.
Ethan walked in with his dad, Floral Park English teacher Dustin Demmers, who was his usual jovial self.
“He’s cheerful and inspired every day,” said teacher Wendy White.
White just doesn’t know how her co-worker does it -- considering that while many parents are thinking about saving for college, Dustin Demmers and wife Betsy are preparing to pay for heart and breathing monitors, a motorized wheelchair and ramp, and a handicapped-accessible van.
Just before Thanksgiving last year, Ethan was diagnosed with Duchenne muscular dystrophy. The generic disorder of the X-chromosome is the most common fatal genetic disorder diagnosed in childhood, affecting about 1 in every 3,500 live male births -- or about 20,000 individuals a year, according to EndDuchenne.org.
Demmers admits it’s been a tough time, but also an uplifting one. He used a YouTube video this past Easter to reveal Ethan’s diagnosis, and since then the Floral Park High community has closed ranks around the family.
“Dustin is everybody’s best friend,” explains Mason. “He’s a magnet and the kids just attract to him.”
Both the students and the faculty feel that way, and have acted in kind. Proceeds from the school’s annual dodgeball tournament went to Ethan’s family, who have started the website MeetEthan.com to raise funds for his eventual needs. When a faculty-only fundraiser was being planned a student went to White and donated the $20 entry fee anyway, just to show support.
“I shouldn’t say I’m surprised,” said Demmers, who also uses the website to lobby for things like the congressional reauthorization of the MD-Care Act. “But I am surprised that people have rallied together so quickly in such a big way.”
According to EndDuchenne.org, males with Duchenne typically live into their late 20s. It makes nights like Thursday -- where at one point Ethan raced toward the dance floor to join the senior class -- all the more precious.
“Our whole way of life has been dedicated to living fully, and living in the present,” Demmers said, his voice cracking for just a moment. “It’s not an easy thing to talk about, but it’s the most comfortable. We think about living as many lives as we can every day.”