“TO THE EDGE OF THE SKY”— Saving a Child

“To The Edge Of The Sky”

Saving a Child

Amos Lassen

“To the Edge of the Sky” is about four moms whose sons are diagnosed with the degenerative Duchenne Muscular Dystrophy, a fatal disease that’s the No. 1 genetic killer of boys and who fight the FDA to gain access to a potentially life-saving drug. Victims are this disease are not expected to live beyond their 20s. As we watch, we see the transformation of these four mothers into the country’s leading political activists pushing the government to allow access to a drug that might help save their sons’ lives.

The film captures how citizen activists can impact government; the “Right to Try Bill” that was recently passed in the Senate is largely due to the political moxie of the four women featured here. The bill allows terminally ill patients to have the right to try medicines after the medication has gone through only Phase One of the FDA process but is not yet fully approved. This law has been signed in 37 states. The film captures the evolution of the four mothers from caregivers for their terminally ill children, with all of the ensuing stress and strain on their personal relationships, to ardent political activists, learning how to navigate government agencies and company boardrooms to reach their goal. The mothers have unrelenting strength in the face of institutional adversity  and that change is possible if we are willing to fight for it. We see the power of courage and hope against all odds. 

 Mindy Leffler says, describes what it felt like to receive a diagnosis that her son Aidan has Duchenne Muscular Dystrophy (DMD). The Lefflers, who live near Seattle, are one of four families in a new documentary that focuses on the very human struggle behind the disease and the ongoing push to get the Food and Drug Administration to speed up potential treatments for boys with DMD before it is too late.

At the heart of the film are the tough questions that go beyond just Duchenne and apply to a range of fatal diseases that currently have no cure. The questions of how should federal regulators balance their obligation to ensure the safety and effectiveness of new drugs with getting promising treatments to terminally ill patients as quickly as possible and much data is enough data to make that call? How much risk is acceptable when the alternative is death?

“To the Edge of the Sky” is about the struggle of families thrust into a heartbreaking situation, and their determined race against time. We see what parents experience when a child is stricken with a deadly illness, and the efforts that they will take, and the lengths they will go to, to save their children.

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