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Posted November 1, 2013 | comments Leave a comment

Stephens City teen ready to embrace life

By Kim Walter

STEPHENS CITY -- For the past four years, William Sanders has been through countless procedures and seen a variety of specialists, only to wind up with a mysterious, undiagnosed illness.

The checkups, tests and surgeries have taken up so much time, that for two months next summer, all he wants to do is "just live."

Sanders, 17, began experiencing leg pain in 2009. However, his mother, Mary Anne Sanders, said it wasn't too concerning since her son had grown about 6 inches during one summer.

"He was pretty clumsy, tripping a lot," Sanders said during an interview in her Stephens City home. "We just started noticing a lot of little things that weren't making sense."

It wasn't until middle school basketball tryouts that William's legs "locked up," as he describes it. At that point, Sanders knew something was wrong.

Initially, a local physician thought William might have some kind of muscular dystrophy, so an appointment was scheduled at Children's National Hospital in D.C. Right away doctors ruled out muscular dystrophy and instead decided William was suffering from some kind of neurological disorder.

As time passed, William required leg braces, and then lost much of his long-term, and some short-term memory.

Eventually, his mother learned that her son had inflammation in the white matter of his brain, which was impacting his ability to receive messages from the brain that would allow proper use of his legs.

Additionally, William's myelin -- a coating throughout the body that protects the nervous system -- is deteriorating, which also causes atrophying of the muscles.

William can walk and stand for short periods of time, but he started his senior year at Sherando High School this fall in a wheel chair. He tried attending full days, but now goes for two classes in the morning and then receives additional tutoring at home.

Even after countless MRIs, spinal taps, genetic testing, skin biopsies and even a brain biopsy in January, no one can figure out what caused his problems, or what can make him better. In fact, William has been put on the undiagnosed diseases list at National Institutes of Health.

"We've seen top specialists; we even sent some of his tests to Europe, and no one can tell us anything," his mother said. "Right now, they're calling it Will Sanders disease. It's that new and perplexing."

William's outward appearance doesn't reflect his health-related issues.

"His smile is always there," his mother said. "How can I break down when he is the one dealing with all of this, and yet refuses to be sad?"

Mike Marsh, a teacher, mentor and coach at Sherando, has been working with
William for the past two years. Through tears, Marsh explained that his relationship with the young man has blossomed into a friendship that he never expected.

"He's like a son to me, the way we carry on and just talk about life," Marsh said during a visit to the Sanders home. Sanders added that Marsh had promised her that he would make sure she would see her son graduate in the spring.

For his first couple of years at the high school, William hid his health struggles from students, teachers and as many others as he could. Over time, Marsh has been able to share the young man's story with others, with William's permission.

Marsh said from the school's standpoint, it's been hard knowing that behind his optimistic, happy demeanor, William is facing something far bigger than they can imagine. Sometimes the teacher will sit with one of the high school's guidance counselors and cry, he admitted.

"We love William, we love his family," Marsh said. "We'll take whatever steps we can to help."

Recently, after being told to do her son's medical directive and power of attorney, William's mother was also given the advice that she and William take in as much life as they can. As a result, William wants to take a cross-country road trip in an RV for two months with his mother next summer.

"No tests, no checkups, just life," his mother said. "We're going to do it."

Sanders has set a fundraising goal of $30,000, and created a website where people can go to donate. After 11 days of it being online, the website has already collected almost $5,000. Sanders and her son called the response surprising and overwhelming.

"Life is precious, and time is short," William said. "But I've always had a feeling that life would work out."

To learn more about William's story and to help support his wish, go to www.gofundme.com/4uq61w.

Contact staff writer Kim Walter at 540-465-5137 ext. 191, or kwalter@nvdaily.com


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