To the Edge of the Sky

The four mothers in Jedd and Todd Wider’s inspiring documentary are doing everything they can for their pre-teen and teenaged children with Duchenne’s muscular dystrophy. Charley’s mother, Tracy Seckler, suspected that her son might have the progressive disease when she noticed minor but troubling mobility issues. She took him to the best neurologists on the East Coast, concluding, "There’s no treatment, there’s no cure, there’s nothing you can do." His father, Benjy, provides the film’s title when he says, "I will go to the edge of the sky to keep him alive." In their case, the couple founded a charitable foundation. Single mother Jenn McNary has two sons with Duchenne’s. Austin uses a wheelchair and younger brother Max doesn’t. The difference: Max has been participating in a clinical trial through Sarepta Therapeutics, a small biotech company. Tracy and Benjy hope to put Charley on the same drug. Otherwise, they will be lucky if he makes it to age 28. Austin didn’t qualify for the initial trial, which only accepted ambulatory subjects. Now Jenn is working to get the drug fast-tracked for approval before it claims another generation of young men (the disease only affects men). She’s been aided in her efforts by Christine McSherry, whose son Jett isn’t part of the trial. The fourth subject, Mindy Leffler, has a son named Aidan who took part in a Prosensa trial in Canada that didn’t go well, in large part because they gave him a placebo. Over the course of the film, the mothers meet with politicians, lobbyists, and members of the FDA, and by the end their efforts have helped to expand the trial pool, although the fight for drug approval continues. Recommended. Aud: C, P. (K. Fennessy)