Mothers of children with rare disease will climb mountains—metaphorically speaking—to fight ­­for their child’s right to a better life. However, it’s few and far between that they will strap on the boots and take a literal hike up a mountain to promote global awareness. But that’s just what Catherine Jayasuriya did for her son, Dusty, in a new documentary called “Dusty’s Trail: Summit of Borneo.”

And after watching the movie, any viewer can see why. Her son, 20-year-old Dusty Brandom is a patient with Duchenne Muscular Dystrophy. More importantly, he’s a positive and good-humored young adult. The documentary shows a slice of what Dusty’s life has been like since his diagnosis.

“Duchenne is a genetic, fatal, progressive muscle wasting condition that affects one in 3,500 boys worldwide. It cuts across countries, cultures and races. Duchenne does not affect the mind. Dusty went from walking at age six to a wheelchair by age nine.”

We see videos of him as a young boy, trying to walk with obvious muscle weakness and hear the story of how his parents first heard the news—and were first asked the heart-breaking question by a young Dusty, “Why don’t we see more adult boys with Duchennes?”

The emotionally gripping and inspiring documentary follows Catherine, Dusty’s mother, as she traces the family’s roots back to Borneo—where she decides to leads a group of people coming together from all over the world to climb Mt. Kinabalu, in honor of the boys with Duchenne.

The story is interwoven with interviews of experts from all over the world. They share their research and outlook for the disease. We’re also introduced to boys in Borneo who also have the disease— and are shown just how little aid they truly have to battle the everyday symptoms.

Overall, the story explains what life is truly like for someone like Dusty who, although he is confined to a chair, is a bright and enigmatic young person—waiting for the world to become aware of just how precious every footstep you leave on this earth really is.

This is a movie that needs to be seen by all those affected by the rare and genetic world: patients, advocates, parents and physicians. It exemplifies what real impact just one voice of support can have over the all-encompassing reality of disease.

To learn more about the film and where you can view it, please visit Dusty’s Trail.

About the Author

Ilana Jacqueline is the Managing Editor of the Blog at The Global Genes Project. She’s a Postural Orthostastic Tachycardia Syndrome and Primary Immunodeficiency patient from South Florida. You can read more from her on her daily blog, www.letsfeelbetter.com.

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