The evening is a joyous family affair, but not because a young girl will learn how to dance while standing on her father's shoes as he shuffles his feet. No, for the Langstaffs the dance marks a simple celebration of life—a celebration that Kaitlyn is still with the family after falling ill to a rare skin disorder that has robbed her of her eyesight, voice and ability to breathe on her own.

It's been almost a year since Kaitlyn was diagnosed with toxic epidermal necrolysis, a severe form of Stevens­Johnson Syndrome. The skin disorder, which starts out as blisters resembling second-degree burns that run throughout the person's inner and outer body, can eventually lead to permanent blindness, lung damage, scarring of the esophagus and other mucous membranes, and in some cases, death.

Despite a year of countless surgeries, physical therapy and having to adapt to a new way of life, Kaitlyn is still smiling through the pain, and the family continues to look forward to small milestones.

And there are still more celebrations in store for the family: Kaitlyn will have a birthday party when she turns 9 this week; people from around the Bay Area will come together for a benefit concert; and Kaitlyn will throw the first pitch to start the Campbell Bobby Sox League's new softball season later in March.

But life hasn't always been about celebrations for Kaitlyn or her family, and the truth is, hard times are still to come. In fact, if any family should know a thing or two about how quickly good times can turn sour or vice versa, it would be the Langstaffs.

Both parents, Brad and Kerry, lost their jobs two summers ago when recession hit the Silicon Valley. Just as fear began to set in about how they would make mortgage payments on their Saratoga home, the Langstaffs heaved a sigh of relief when Kerry landed a new job with Nuance Communications. To celebrate, Brad and Kerry decided to whisk their two daughters, Kelly and Kaitlyn, then 11 and 8, off on a trip to Yosemite.

They never made it.

Photograph by George Sakkestad Physical therapist Christine Hansen walks Kaitlyn back and forth in the swimming pool to exercise her legs. This was the third-grader's first time back in a pool since before she got sick.

Doctors had diagnosed her with toxic epidermal necrolysis, which has a mortality rate of up to 70 percent, according to some studies. Most deaths occur as a result of organ failure. Almost any medication, including over-the-counter drugs and penicillin, can cause the syndrome. In Kaitlyn's case, it was a severe allergic reaction to children's Motrin, doctors say.

Meanwhile, the family, unable to accompany Kaitlyn in the helicopter ride because there was not enough room, rushed down to Los Angeles in a car. That was April 15, 2002—the day Kerry was to begin her new job.

Needless to say, Kerry never made it in to work. Instead, she spent the rest of April and May by her daughter's hospital bed in Los Angeles.

Kaitlyn was then flown to Stanford Hospital on May 31. She spent another two months in the hospital before doctors declared her well enough to return home. By this time, Kaitlyn had already lost her sight, voice and more than 20 percent of her body weight.

Photograph by George Sakkestad Kelly, 12, does her sister's hair for her big date with Dad. The annual Indian Princess dance at the YMCA is a family tradition, dating back to the years when their father accompanied Kelly to the dance.

I hate the doctor.
It is a yucky place.
The eye doctor shines lights
In your face ...

I hate the doctor.
I have a lot more.
But they are so bad,
them I'll ignore.

That poem was written in November 2002. One month later, she was back in the hospital for what should have been an outpatient surgery on her esophagus. Neither doctors nor the family had plans for her to stay the night at the hospital, but she did not wake up from the anesthesia. She ended up spending a week—including Christmas Day—in the intensive care unit at Stanford Hospital.

Kaitlyn spent another four days in the hospital in January but now seems to be recovering. She is scheduled to undergo another surgery in March.

Having lost her ability to speak, Kaitlyn has found another form of expression—writing. Over the last couple of months, Kaitlyn has written more than 30 poems, including one called "I Am the Same Inside."

I am the same inside,
as some people can see.
But some people think I'm weird
because they don't look inside of me.

I am the same inside.
That's what I want people to know.
So I'm going to start
letting it show.

I am the same inside.
I'm not dumb in any way.
I just want to be like
a normal kid and play.

I am the same inside,
just like a normal kid.
And I want to let everybody know,
this is what I did.

As her poem indicates, Kaitlyn is "just like a normal kid" in many ways. She loves music—her favorite artists include Pink, John Mayer, Matchbox 20, Avril Lavigne and Jack Johnson. She still plays with her friends, enjoys arts and crafts and walks the dogs. And, Brad says, she is mad at the San Francisco Giants for losing in the World Series.

Photograph by George Sakkestad Kerry checks the oxygen machine as Kaitlyn experiences a moment of difficulty breathing.

"How can you not be touched by their story—how the glass is always half full?" Don Miggs, the band's lead singer, said of the Langstaffs. "It just humbles you and makes you realize there are much bigger things in the world than what you may have on your plate."

The band was first approached by Romeo Durscher of ROCK101 Promotions to record the song. When Durscher came across Kaitlyn's poem in November, he thought, "Oh my God! This is something that could become bigger than a poem!" and immediately envisioned turning it into a song.

In January, the Miggs went into Soundtek Studios in Campbell to record the new track. Music producer Robert Barry had offered the facility and recording time free of charge. Watching, off to the side, were Kaitlyn, Kelly, Kerry and Brad.

"It was such a precious moment to see Kaitlyn try to sing along to her song and to see her smile. It was fantastic," recalls Durscher.

Barry, raised in Saratoga himself, had learned of Kaitlyn's condition from his mother, who still lives in Saratoga. Besides offering free studio recording time, Barry also wrote a song called "The Miracle of Life," which will appear on a benefit CD for Kaitlyn.

Photograph by George Sakkestad Kestrel Pasos walks Kaitlyn from the living room into the kitchen, where friends help Kaitlyn's mom bake M&M cookies.

Creation of the CD was also made possible by the All Stars Helping Kids organization, headed by former San Francisco 49ers defensive back Ronnie Lott. The nonprofit organization paid the expenses for the production of 5,000 CDs, which will be sold during a benefit concert at Santana Row on March 1. The event itself is free, but participants can purchase a CD for $10 each, with all proceeds going to the Langstaff family.

"It's a fundraiser, but it's more a celebration of life," Brad says.

Kaitlyn is completely enthused about the concert, Kerry says, because listening to music is one activity she can still do though she cannot see or speak.

The March 1 concert is not the first fundraiser in Kaitlyn's name, nor will it be the last. One student at Saratoga High School has organized a fashion show and silent auction at the school for March 22.

Over the past year, the Langstaffs have been showered with outpourings of love and support from friends, acquaintances and even strangers from all over the country—gestures that Kerry emphasizes the family is truly grateful for. Thousands of letters, cards and drawings have flooded the Langstaff home, and the family has received money ranging from a $1 bill to a $1,000 check. The Langstaffs have even received support from a classroom in Florida. Apparently a grandmother of one of the students in that class had known Kaitlyn's grandmother, Brad says.

Photograph by George Sakkestad Kaitlyn savors the experience of tasting cookie dough. This month she's started eating solid foods again, having been on a liquid diet since last April.

The giving does not stop there. Various schools have raised money to help the family. One preschool held a car wash; another had a bake sale. Kelly's friends raised $270 by selling 25-cent popsicles to classmates.

When news of her situation began to spread and kids at school started recognizing her, Kaitlyn at first felt "like Britney Spears," she says, forming the words with the aid of an electronic larynx called the Cooper-Rand. Kaitlyn places the Cooper-Rand tube on her tongue, mouths the words, and the machine picks up the vibration from her throat and creates the sound. Kaitlyn also relies on oxygen filtered through a tracheotomy tube to help her breathe.

But being Britney is not what the Forest Hill Elementary third-grader wants. Having missed out on the last part of second grade, Kaitlyn insisted that she be in Julie Dorsch's third-grade classroom the first day of school in August 2002.

"We were really for it," Brad says about his daughter's decision to return to a regular school.

"We were pushing for it. We pushed to bring her home," Kerry adds.

Photograph by George Sakkestad Casey Morris (left) reaches over to help Kaitlyn with a class assignment involving money as Kaitlyn's aide watches by her side.

"She's probably my top kid. She's incredibly mature in her intellect and her attitude and the way she deals with things," Dorsch says.

It's at least an hour-long routine to get Kaitlyn ready for school in the morning. She wakes up at 7:30 a.m., and her parents put medicine in her eyes, fill her oxygen tank, prepare liquid food in a pump and pack everything up into the car. Twice a month, she has to be at school by 7:30 a.m. to represent her class in student council.

But her political aspirations do not end with student government.

Kaitlyn holds fast to dreams that she will one day become the "first female president, an astronaut, a veterinarian and an artist."

As far as academics go, math used to be her favorite subject until she couldn't see the numbers anymore, her parents say. But recently, Kaitlyn began learning how to read in Braille, and she writes in cursive like her fellow classmates. Kaitlyn uses specially lined paper, where she can feel the lines with her fingers, to help guide her in writing straight.

Now when you ask her what her favorite subject in school is, the proud third-grader says, "Braille!"

Photograph by George Sakkestad Nicole Zannini, a specially trained health aide hired by the Campbell Union School District, wheels Kaitlyn to her class when the bell rings to signify the end of recess.

"I was scared at first because I thought she would never get better," Gomez says. But now she's found that Kaitlyn's "still the same."

"We just talk and listen to Avril Lavigne together," she says.

After school, Kaitlyn's daily routine consists of going to a doctor's appointment, followed by homework and some time to relax in the evening. She is still an avid fan of Survivor, American Idol and Joe Millionaire. Once, Kerry recalls, Kaitlyn had a dream where she was on Survivor, and every time a plane arrived with letters for the contestants, the pilot also brought a new oxygen tank to her.

Several momentous occasions have occurred in Kaitlyn's life in just the past two or three weeks. Now that she's feeling better, her parents no longer have to be by her side round the clock. Before, either Brad or Kerry had to attend school with her all day, even though the Campbell Union School District had already hired a special health aide for her. Since mid-February, her parents have dropped her off in the morning, and, her teacher says, Kaitlyn tries to hurry her parents along.

Kaitlyn's somewhat improved health also means she's sleeping better, Kerry says. Nevertheless, Kaitlyn still has a bell by her bedside that she'll ring if she needs something in the middle of the night. Except for guardrails on the bed and an oxygen tank standing in one corner, nothing appears atypical about Kaitlyn's room.

Photograph by George Sakkestad Honora LaMontte, Kaitlyn's kindergarten teacher, draws her former student close to her when Kaitlyn drops by to give her a Valentine's Day card.

Perhaps the biggest recent breakthrough yet is Kaitlyn's transition into eating solid foods—something she's missed the past 10 months. She's been working with a therapist to learn how to chew again, but for the most part, she still uses a feeding tube attached to her stomach. When Kerry accidentally describes the liquid diet as "baby food," Kaitlyn is first to correct her that it's a "big kid" formula.

A note on the Langstaffs' refrigerator door, written in Kaitlyn's cursive handwriting, lists the food she's requested her father to make for her ninth birthday, Feb. 25. That day, Kaitlyn will have a birthday party with some of her closest friends. She wants Dad to make mashed potatoes, ham and biscuits, and, she tells him, "You can add a green vegetable if you want." Finally, for dessert, Kaitlyn requests ice cream.

She's got another wish list of gifts she'd like for her birthday: No Doubt and Vanessa Carlton CDs, clothes from Limited Too, earrings, charm bracelets and an array of Described Videos, which are VHS tapes that describe what's on the screen to a blind person.

Two weekends ago, Kaitlyn, her sister Kelly and a couple of Kaitlyn's friends made a video of themselves. Pretending to be on American Idol, the girls took turns in lip sync performances. Kaitlyn was suddenly transformed into John Mayer, singing "Why Georgia."

It was the same weekend that Brad and Kerry finally got to spend some time alone. The night of Valentine's Day, Kaitlyn's health aide from school, Nicole Zannini, dropped by the house to sit with her so that Brad and Kerry could go out to dinner—something the couple has not done since before Kaitlyn got sick.

"That was a whole new experience for us, too," Kerry says.

Last week, the family and Kaitlyn's friends gathered in the living room for a round of poker. The cards are just like regular cards, with the exception that the numbers are written in Braille in the corners so Kaitlyn can "see" her hand.

Photograph by George Sakkestad As Kerry, Kaitlyn's mother, brainstorms activities that the kids can do, Kaitlyn nestles her head next to Boo-Boo, from whom she frequently seeks comfort.

Kelly describes her daughter's relatively fast progress as "a miracle." She notes, however, that doctors do not yet know whether Kaitlyn will ever recover completely, though everyone will be on a close lookout for medical advances.

Should Kaitlyn continue to show signs of improvement, Kerry says, she and her husband might be able to actively look for work again. Both Brad and Kerry are still unemployed, although Kerry has taken on a couple of projects as a marketing consultant, which she works on at home. The Langstaffs are living off money from Brad and Kerry's savings account, the 401(k) plan that they've cashed in and contributions from the community.

Though the Langstaffs have been without jobs, that doesn't mean they're out of work. Kerry notes that attending to Kaitlyn's medical needs, picking up her medication at three different pharmacies, driving her to school and her doctors' appointments—she has nine specialists that she sees regularly—and dealing with the insurance company is a full-time job in and of itself.

Kerry is hoping she'll be able to resume work full time from home as a marketing consultant and says Brad might look for part-time work outside the house so that he will still have afternoons off to drive Kaitlyn to her doctors' appointments. But as things stand now, neither one can work full time outside of the house "because there are too many unknowns."

And even with Kaitlyn becoming somewhat more independent, Brad and Kerry still have their other daughter, Kelly, to think about.

Photograph by George Sakkestad Brad Langstaff presents his daughter with a corsage he's bought for the Sweetheart Dance, the annual father-daughter dance at the YMCA.

Brad helps Kelly with her math homework and history projects and is teaching her how to cook. Kelly still coaches Destination Imagination, a team of seven girls from the middle school that compete in challenges that test their mental skills and creativity. The girls meet at the Langstaff home twice a week, and they're preparing for another competition coming up on March 8.

When it comes to Kelly's relationship with her sister, Kelly describes it as "exactly the same, but different."

"I can't tackle her anymore," Kelly says. "But basically she's the same; she's still Kaitlyn."

The Langstaffs "have pulled through remarkably well. Brad and Kerry support each other so neither one is overwhelmed," says Karon Pasos, who lives across from Brad and Kerry and whose daughters are in the same grades as Kaitlyn and Kelly.

Pasos fed the family's dog and cat and made sure someone mowed the lawn while the Langstaffs were in Los Angeles last year. She continues to coordinate the weekly meals that neighbors prepare for the Langstaffs.

"They're doing a good job of trying to function as normally as possible," she says.

Photograph by George Sakkestad Sporting a new outfit and new shoes, Kaitlyn shows off her dance moves for her dad. Kaitlyn did leave her father's side later that evening to dance with her friends.

"Although Kaitlyn can't see, she's still all smiles," he adds.

Ask anyone who's met the Langstaffs and they'll tell you how they were struck by the family's strength. Yet the situation continues to be a challenge.

"The hard part is our whole future's changed. All of our plans for our daughter and our lives ... " Kerry begins.

"All of us, we're coming along," she says, reflecting on how one year ago at this time Kaitlyn was still playing softball and soccer and taking tap dancing lessons.

"It makes you realize how much the everyday stuff actually means—working at snack shacks at games, going to McDonald's," she adds.

But the Langstaffs don't have time to dwell on the negatives, Kerry says. They're focused on reclaiming a sense of normalcy.

"It's just happened, and we have to deal with that," Kerry says. "Let's make the best of our situation and not dwell on things we can't change."

The "I Am" benefit concert will be held March 1 from 1 to 5 p.m. at Plaza Di Valencia in Santana Row. To log onto Kaitlyn's website, visit www.kaitlynlangstaff.org. Donations can be made by writing to Kaitlyn Langstaff, P.O. Box 3731, Saratoga, 95070.