Five-Year-Old Faces Hair-Loss Disorder With Outgoing Spirit

Samantha Hollon doesn't think of herself as different.

Like other 5-year-olds, the Lakeland child loves to swim and dance, teases her older siblings relentlessly, gets excited about a loose tooth and likes to play fetch with her dog, Sonny.

It's only when strangers ask her why she doesn't have hair that she remembers she doesn't look like everyone else.

Samantha has alopecia areata, a skin disorder that has left her completely hairless. She has no eyelashes or eyebrows, no hair on her arms or legs, and only tiny blond fuzzies on the top of her head. Basically, she's allergic to her own hair. There is no known cause -- or cure.

While more than 4 million people in the United States have been diagnosed with the disease, neither Samantha nor her family has ever known anybody else affected by it. Strangers think she has cancer. Kids stop and stare.

"We tell her she's lucky. She can have any color hair she wants. She can have purple hair if she wants," said her mother, Gay Lee Hollon. "But I think it's hard for her sometimes."

Samantha has always been surrounded by friends and family who understand and accept her disease. But she's about to face the world on her own: She starts kindergarten at Wendell Watson Elementary in a few weeks.

And though the little girl has sparkling brown eyes, a wide grin, and an outgoing personality, her mother is worried that other kids will only see one thing: her daughter's bare head.

Until she was 3, Samantha's hair was her most noticeable feature. Full, blond and curly, her ringlets earned Samantha the nickname "Curly Top." She liked to put on Shirley Temple videos and dance along.

`SHE'S NOT SICK'

"She'd say, `Look, she's Shirley Temple and I'm Curly Temple!' " Hollon remembers.

Then, practically overnight, Samantha's hair started falling out. She went swimming and emerged from the pool with bald spots all over her head. Hair fell out by the fistful. Within a week, she only had wispy strands left. Within a month, it was all gone.

Samantha was terrified.

"She kept asking, `What's wrong with my hair? Where's all my hair going?' " Hollon said.

The diagnosis brought mixed feelings for her parents. Relief, because Samantha was perfectly healthy. And pain, because the chances of her hair growing back are slim to none, and Hollon and her husband, Dale, knew Samantha would have a tough time feeling accepted in an appearance-focused society.

"People think she's sick. They mean well, but they make all kinds of comments right in front of her," Hollon said.

Most of the time, Samantha doesn't even seem to realize she has no hair, her mother said. The little girl is a natural extrovert and easily wins people over with her bubbling personality and outgoing spirit. She loves an audience, hams it up in front of strangers, and has a healthy sense of humor about her condition.

"She has this ball cap with a ponytail sewn on the back, and people think it's her real hair. So they'll say, `Oh, your hair is so pretty!' And she'll whip off the cap and say, `Oh, that's not my real hair. I don't have any hair,' " Hollon says.

But every once in a while, something will happen to trip her up. Once, while waiting in line at a McDonald's, Hollon had to explain to a pushy stranger that Samantha did not have cancer.

"I said, `She's not sick. She has alopecia. She just lost all her hair,' " Hollon said. "And the woman looks at me and says, `Oh my gosh, that's worse.' "

That's why Hollon is so worried about kindergarten -- because people can be cruel without even realizing it.

Wendell Watson's principal, Diane Herring, says the school will do everything it can to help Samantha make a smooth transition.

"We've worked real hard to create a climate where people love each other and take care of each other," Herring said. "I'm not worried. She will be just one of our children."

GROWING AND SHARING

Samantha stands poised in her mother's living room, waiting until she's sure her brother and sister are watching. Then she executes a crooked cartwheel, leaping to her feet at the end and triumphantly throwing her arms in the air.

"Look at me!" she shouts, grinning widely. "Want to see me do it again?"

Samantha clearly loves the spotlight. But she hates getting attention for her disorder.

So her parents are looking into a custom-made wig for Samantha, which involves using real human hair and costs more than $3,000.

Both Hollon and Samantha's sister, 7-year-old Cathleen, are growing their hair so it can be cut and used in Samantha's hairpiece. Some of their friends have already donated their ponytails for Samantha. It will take between 10 and 15 ponytails to make the hairpiece.

Samantha is excited about wearing hair, and wants the simplest of pleasures: She wants to sleep in it.

"It's such a simple thing, but I think it would make her feel normal," Hollon said.

Meanwhile, her mother is hoping to start a local support group so that victims of alopecia areata can share experiences.

"She doesn't know anybody else like her. The only people she sees with no hair are men or boys," Hollon said. "I think it would help her."

The best thing people with alopecia areata can do is talk about it, said Lisa Gallagher, spokeswoman for the National Alopecia Areata Foundation in San Rafael, Calif., which provides support for people with the condition.

"It's a very, very, very difficult disease no matter what age you are, and so people do everything they can to hide it," she said. "But we have to acknowledge that there are so many people who have it. That realization can be a great healer."

For now, the Hollons are focusing on helping Samantha remember that it's not what's on top of her head that matters -- it's what's inside.

"She's not disabled. She's not sick. She's just a regular, outgoing, extroverted child who has a bundle of energy," Hollon said. "And we love her."

My daughter has alopecia too

Cheers for Samantha! I have a four-year old daughter, Sophia, who has been bald since 5 months. Like your daughter, Samantha, most people do not notice that she is bald. She is extremely outgoing and often makes friends quickly. I am very am very proud of how she holds herself and am committed to ensuring that her little spark never changes.

How are your children saving their cut hair for your daughter's wig?

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