Girl finds friendship, hope in teen with same disease

PEMBROKE PINES, Fla. -- When 6-year-old Kelly Williamson looks at Lauren Beeson, in many ways, she sees her future.

Both girls are blond, though 13-year-old Lauren's hair is longer. Each is chatty and quick with a smile. When Lauren tells of her dream to be an actress on Broadway, Kelly shouts "Me too!" running and jumping on Lauren's bed for a cuddle.

As they lay side by side, a closer look reveals more similarities. They include indentations that make the blue veins running down each of their foreheads visible -- and the way one of Kelly's cheeks is becoming more prominent than the other, as Lauren's already is.

Both girls have scleroderma, a chronic, sometimes fatal autoimmune disease related to rheumatoid arthritis and lupus. Symptoms can range from a thickening of the skin to deteriorating function in such organs as the esophagus, lungs and heart.

About 300,000 Americans have various forms of the disease, all of them causing mostly irreversible damage and disability. Most who develop the systemic, fatal form are adults, and the large majority of those are women, according to the nonprofit Scleroderma Foundation.

While Lauren and Kelly are expected to survive, even experts admit that predictions about the complicated, highly individualized disease can be wrong.

Such a prognosis can make for a lonely, sometimes scary path. So when Kelly and Lauren first saw one another, "there was an instant connection," says Kelly's mom, Betsy Williamson.

Found a role model

The two girls, who live in suburban Fort Lauderdale, Fla., met last fall at a southeast Florida chapter meeting of the Scleroderma Foundation. That day they wound up playing hide-and-seek -- and it was apparent, even to Lauren, that Kelly had found a role model.

"I guess she kind of looks up to me," says Lauren, who was Kelly's age when she was first diagnosed.

While the symptoms are rarely the same for any two people, Lauren provides a basic road map for Kelly and her parents about what to expect.

Both girls have what is known as the "linear" form of scleroderma, which means many things -- most noticeably stunted growth on one side of their bodies.

As Lauren describes it, "I am basically years younger on my left side and a normal 13-year-old on the right."

A small mirror image of Lauren, Kelly is stunted on the right.

Her right buttock is so small that her pants and shorts must have an elastic or drawstring waist so they don't fall down. And her skin, including on her face, has brown, flaky patches.

"I'm a dalmatian," the spunky first-grader tells anyone who asks.

When times are tough, the girls and their mothers comfort one another. They trade advice on doctors and a long list of medications.

As Kelly and her parents watch Lauren, they're also learning how to minimize the disease's external effects. Lauren, for example, uses bleaching cream to lighten dark skin patches, and wears a lift in her left shoe to soften a limp by giving her shorter, thinner leg a boost.

She also has braces on her teeth to prepare her for more craniofacial surgeries, attempts to help the left side of her somewhat pinched-looking face keep pace with the right.

To do so, doctors will eventually break her jaw. They also may have to open her skull to make room for her growing brain.

"Do you think they'll find it?" Lauren says with a smirk. Her mother, Marsi Beeson, says Lauren's sense of humor has helped her daughter cope.

"As tough as it's been, I have to say that she keeps me positive because if she's not complaining, I say, 'Then what do I have to complain about?"' she says.

Still, while Lauren downplays the pain, the disease is not without discomfort. Both girls have migraines, joint pain and, because they have suppressed immune systems, heightened susceptibility to colds and infections.

Adults who have scleroderma often wear gloves because of an extreme sensitivity to cold. Even picking up silverware in an air-conditioned room can be painful.

Initially, Lauren's disfigurements drew taunts from fellow students.

They called her "Two-Face" after a villain from the "Batman" comics and movies. Lauren's advice for Kelly: "Ignore them." Or better yet, she adds, tell them about scleroderma so they understand.

Lauren's teachers did the latter with her classmates. That, along with articles about her in the local papers, helped turn things around.

"Now my friends don't even notice it," Lauren says.

Both she and her mom, with whom she shares a two-bedroom apartment, note other positives.

Once so shy she rarely looked people in the eye, Lauren is now the poster child for the Scleroderma Foundation and testified earlier this year before a congressional committee to ask for more research funding.

Along with actors Jason Alexander and Bob Saget -- both with family members affected by the disease -- her work has helped heighten the profile of a disease many Americans know little about.

Even less is known about children with scleroderma, making Lauren's presence in Kelly's life that much more important. Whatever happens, Kelly -- who often follows Lauren from room to room -- is sure of one thing: "I want to be with Lauren."

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On the Net: http://www.scleroderma.org