Dying teen faces fate with a smile

Posted: December 2, 2013

The Winchester Star

William Sanders, 17, and his mother, Mary Anne Sanders of Stephens City. William suffers from an illness that doctors have been unable to identify. (Photo by Ginger Perry/The Winchester Star)
William Sanders plays video games in his bedroom. “I’m not going to die today and most likely I won’t die tomorrow, so I got the next two days covered,” he says with a smile. (Photo by Ginger Perry/The Winchester Star)

STEPHENS CITY — William Sanders walks with a slight hitch in his step.

On a cold day in November, it’s the only sign that there might be something wrong with the 17-year-old Sherando High School student.

But behind the playful eyes and the bright, contagious smile is a teenager who suffers from a neurological disorder that expert doctors can’t diagnose. The condition is so severe that doctors have told William to make his bucket list — a list of things he wants to do before he dies.

“No one has ever seen anything like it,” said his mother, Mary Anne Sanders. “He’s that case that every doctor wants to solve.”

The symptoms began when William was 13. His knees hurt and his legs were stiffening up. After 20 minutes of basketball tryouts in seventh grade, he called his mom to tell her that his legs had locked up on him and that he couldn’t participate.

The first thought doctors had was that it was Duchenne muscular dystrophy, a condition that affects 1 in 3,600 boys and results in muscle degeneration and eventual death.

But that proved to be wrong.

William began spending 10 to 15 days a month in the Children’s National Medical Center in Washington, D.C., undergoing skin biopsies, spinal taps, blood work, a brain biopsy and genetic testing.

A team of 14 doctors were assigned to solving his case. William’s primary doctor is one of the premier white brain matter specialists in the world.

Despite the extensive teamwork, nothing could be diagnosed. All auto-immune diseases and genetic disorders were ruled out.

Over the years, William started showing signs of peripheral neuropathy — a disease of the nerves in the peripheral nervous system that can affect sensation, movement, organs and the autonomic nerves (which control automatic functions such as heart rate, body temperature and breathing.)

Currently, William has inflammation in the brain, and his muscles and organs are slowly deteriorating. His long-term memory is gone, and his short-term memory is somewhat hazy. He uses a wheelchair to get around school, which he attends for only three hours a day. When he walks, he wears leg braces.

The National Institutes of Health has just put him on the list of undiagnosed diseases. The next step is for the teen to agree to experimental tests at the institute.

But William smiles through it all, despite his family losing their house due to medical bills and moving into a smaller apartment.

“I just try to keep the most positive outlook possible,” he said. “I can’t do anything about it, so I just got to deal with it.

“I’m not going to die today and most likely I won’t die tomorrow, so I got the next two days covered,” he added with a full-watt smile.

Mary Anne said it has taken four years, but her son has adjusted to his disease.

“William has just been amazing throughout all this,” she said. “He never ever complains.

“We all have an expiration date, he’s just able to know his is coming.”

In fact, Mary Anne said her son tries to keep everything a bit less heavy through humor.

After a two-hour MRI (which he gets done every six months), William, his face red from heat, once joked: “I’m done. I feel like a pot roast. Stick a fork in me.”

When a doctor once asked him to undress, he quipped that he usually gets taken out to dinner before such a proposal.

The disease is currently affecting William’s gastrointestinal tract. Once it reaches his respiratory system, doctors aren’t sure how long he can survive. The Make-A-Wish Foundation has contacted him about fulfilling his dying wishes.

That’s why William is graduating school early so he and his mother can go on a two-month trip across the country to visit places such as Yosemite National Park, the Grand Canyon and Niagara Falls. They need to raise $30,000 to pay for an RV and trip costs. (Sherando staff and students have already donated $4,600).

“We’re buddies now,” Mary Anne said. “You don’t go through something like this...,” she trailed off. “We’ve always been close, but in a lot of ways this is a gift. It turns your world upside down, but it makes you see what’s really important in life.”

She added that William doesn’t want anyone to feel sorry for him.

“Because I don’t feel sorry for me,” William added. “I’d just like people to try to understand each other more. And keep your head up to anyone out there.”

Individuals who would like to donate should do so through the William Sanders Fund at all Union First Market banks in Martin’s grocery stores and City National banks.

— Contact Rebecca Layne at rlayne@winchesterstar.com