Stories Lived

Pearson Syndrome and Eli: bELIeve!

Eli was diagnosed with Pearson Syndrome — a rare mitochondrial disease that develops into Kearns-Sayre Syndrome in children who survive infancy — when he was one year old, and his parents were told his life expectancy was between three and five years. The disease affected Eli’s vision, hearing, cognitive function, muscular function, mobility and cardiac conduction. However, he surpassed his life expectancy and lived to 15, after passing away this past October. This past September, along with my community, I shared a special moment with him. My football team pushed him in his wheelchair during halftime of a game to score an honorary touchdown. As the whistle blew, the crowd roared. Turf flew, as the players blocked, leading Eli to the end zone. Eli was victorious. As he celebrated his victory the players surrounding him represented the communities he inspired and changed forever. Eli has inspired me to keep on spreading his story. I hope one day, it can reach the rest of the world.

 

About the Filmmaker
Submitted by Charlie Ehrman

Charlie Ehrman is a 17 year old filmmaker from Huntington, New York. He has worked with Fusfoo media for the summer of 2016 as an intern and content creator. Taking passion in writing, directing, and cinematography, his portfolio includes narrative shorts, documentaries, and behind the scenes for music videos for BetterDays Production Company. He has attended camps and conservatories such as SOCAPA and Manhattan Film Institute, where he was able to work and learn from Oscar winning writers and actors, as he created his own short film. His films have been screened across the country at festivals, including Los Angeles Cine Fest, Take Two International Film Festival, Indiana Short Film Festival, Gold Coast international film festival, and many more. Ehrman’s goal is to take filmmaking to a new level through his vision of storytelling.

Filmmaker’s Website:  https://vimeo.com/charlieehrman

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