Boy born in a broken body invents his way out

SYNOPSIS:

Duchenne Muscular Dystrophy's symptoms of highly-defined muscle mass is usually noted by the time a baby has his early "Well-Baby" checkups. As baby grows into the toddler years, it is a given that the disease will have been identified. In the case of David Muir, poorly-trained younger doctors merely made admiring comments to Mrs. Muir about how strong her little guy would grow up to be with such highly-defined muscles. Yet David Muir couldn't even crawl. Thankfully, although misdiagnosed until age 6, a skilled pediatrician connected the dots and explained to his family that this type of Muscular Dystrophy would be with David for life. Once the Muir family understood that a specific broken-chromosome on family DNA lines was responsible, they also learned that David would not live past the age of twelve if he could even survive that long. Unable to move, walk, feed himself or care for himself in any way, and unable to cavort with playmates like normal children, he would depend primarily upon his devoted mother for all his daily and nightly needs. David's intelligence was high on the scales and he was gifted with strong mental processing abilities. The Muir family of mother, father (a systems analyst) and younger sister was warm, tightly-knit, fun loving and optimistic. They were spiritually restored regularly by church attendance, shared meals and outings with their many friends. David was witty, charming and beloved by all who knew him. As David grew, to the surprise of medical prognosticators, David not only made it past age twelve, he thrived in every way, especially when he graduated to a motorized wheelchair. David was finishing an assignment in his second semester of college as a home student working by computer, when a mishap caused him to become separated from his oxygen feed. As June Muir, his mother, explained, she was about to go for groceries, yet felt a distinct impulse to check on David, and found him on the floor, blue and not breathing. Paramedics rushed him to the hospital where he was put on a ventilator...for life. While thankful that he'd thwarted death again by this new life-line that enabled him to breathe, David realized he could no longer talk, as the ventilator airstream could not activate vocal cord movement necessary for speech. The vent would keep him alive, but what is life without the ability to communicate by talking? In a remarkable breakthrough, David, himself, applied all his efforts to inventing a simple medical prototype device that activated his vocal cords into producing sound which, in normal speaking, is then modulated by the tongue, oral cavity and lips -- and voila, words are spoken. While the act of generating speech is rarely given a second thought by most people, a complete inability to speak would be tantamount to death itself. The device David invented while not being able to talk went into production in the 1990's and continues to give the gift of speech to multiple millions of ventilator-dependent people across the world to this very day.

Writer's note: As a speech-language pathologist for 45-years, I worked with patients and their families in various medical settings and educational settings to help improve diverse issues of communication across the vast spectrum of speech and language needs. It was my privilege to learn about David Muir in the early 1990's, who--now long after his death--should never be forgotten, especially by those who are once again able to talk, and all because of David's remarkable invention that he succeeded in miraculously creating while he, himself, was unable to talk: The Passy-Muir Speaking Valve. It is for this reason that, with the loving support of his family and other beneficiaries of his invention who can now communicate verbally, our goal is that his story will become more widely known by the screenplay I have written: Higher Ground. The title is taken from the hope of many who have experienced the difficulty of living with a physical disability that they will one day walk, run and leap on Heaven's "higher ground" with healthy bodies and great and jubilant joy.

Disclaimer: I attest that I have no affiliation whatsoever with Passy-Muir, the company or its products. Rebecca Riseling, M.A., CCC-SLP, writer in various mediums since age 3.