The Star Gazette recently reported that Alan Ramsay Evans, a 34-year-old man from Horseheads, New York, remains in the hospital after developing respiratory failure.
Three decades ago, when he was just a boy, he started losing races up the stairs to his younger sister – who was only a toddler. His mother, Stacy Evans, was concerned. She took Alan in for examination not long after.
After some tests, he was diagnosed with muscular dystrophy (MD). It was predicted that he would be in a wheelchair by his 10th birthday; and that he probably wouldn’t live to see a 21st. The Evans family was in shock.
About Muscular Dystrophy
Muscular dystrophy is a group of over 30 inherited diseases. All of these diseases lead to muscle weakness and muscle loss, though they vary in what muscles they tend to target.
Understandably, symptoms vary. Progressive weakening of muscle over time seems to be the only universal commonality – most people with MD eventually lose the ability to walk.
There is no known cure for any type of muscular dystrophy, though a number of devices, therapies, and pharmaceuticals exist that can make the condition more livable.
The diseases vary in rates of occurrence, but are all rare. The most common form of muscular dystrophy is called Duchenne muscular dystrophy (DMD), which affects only an estimated .016% of the population (that’s 16 cases in ever 100,000 people).
Some forms of muscular dystrophy can arise in infancy or early childhood, while others don’t typically present symptoms until middle age or later.
In spite of what we do know of MD, there isn’t much available data about who is living with the condition. By their own admission, most of the Centers for Disease Control and Prevention’s (better known as the shorthand CDC) available information about muscular dystrophy comes from outside the United States.
Alan Ramsay Evans
The Evans family was probably told some version of the above that fateful day 30 years ago.
Alan was specifically diagnosed with Duchenne muscular dystrophy, the most common type of MD. It typically affects the upper arms or legs first, but can progress to the throat, stomach, heart, and even brain.
His case seemed to be typical – most cases of DMD appear before five years of age. Nobody could predict that Alan would lead a relatively normal life into his mid-20s.
In 2010, however, his mobility began to decline. It was the beginning of a downward trend that culminated with Alan being permanently confined to a wheelchair just two years later.
Late last year Alan was hospitalized with respiratory failure that developed from a minor cold. It was the first time he’d been hospitalized from the condition, and it was critically serious. For a period of time he was placed on life support.
Alan survived, but is still in the hospital. The Evans’ family insurance was enough to cover some of the expenses, but after a few weeks the provider allegedly relayed that they would deny a stay longer than January 22nd.
The Evans family has been paying Alan’s medical bills out of pocket since that time. It quickly adds up to many thousands of dollars each month.
To help cover the cost of his care, the family has set up a GoFundMe. Among other things, raised funds will go towards round-the-clock care for Alan, and a new van that is wheelchair accessible.
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