Posted on Sun, Mar. 02, 2003

Making music for Kaitlyn

Sale of benefit CD at event raises finds to help cover medical expenses

By Linda Goldston

Mercury News

Saturday was her day, and Kaitlyn Langstaff handled it the way any celebrity would: She signed autographs.

But this wasn't just her name scribbled on pieces of paper. This young star autographed copies of a CD based on her poem at a benefit concert in her honor, with hundreds of people in the audience.

For a 9-year-old Saratoga girl who suffers from a rare disease, the concert at San Jose's Santana Row was a dream come true. It was also a dream come true for her parents, who worried Kaitlyn might not make it to her ninth birthday Tuesday.

``I keep asking her if she's too tired to sign autographs, and she shakes her head `no' vigorously,'' said her mother, Kerry Langstaff. ``She's having a ball. She puts a little heart above the `i.' ''

Kaitlyn suffers from toxic epidermal necrolysis, a severe form of Stevens Johnson syndrome, which attacks the skin and mucous membranes and causes lesions that resemble second-degree burns. Her doctors think she had an extreme allergic reaction to flu medication when she became ill 11 months ago.

The disease has left her unable to see, speak or eat regular food. She breathes bottled oxygen through a tube in her neck and has a feeding tube in her stomach. She speaks with the aid of an electronic larynx.

And it was Kaitlyn's use of the speaking aid that stole the show on Saturday after she was lifted to the stage in her wheelchair.

``I just wanted to say thank you to everybody who's been helping me and praying for me and who came to the concert,'' Kaitlyn told the crowd at Plaza di Valencia at Santana Row.

She had just gotten to hear the debut of the song based on her poem ``I Am the Same Inside,'' by the San Francisco rock band Miggs. Kaitlyn sat beside the stage with her friend Kestrel Pasos and sang along as Miggs performed.

``This is so cool,'' said Kestrel, who is 8. ``I'm going to be in a talent show with Kaitlyn at school. We're going to dance to Britney Spears' song `Lucky.' ''

The benefit concert was organized by Romeo Durscher of Rock 101 Promotions after he read Kaitlyn's story and a poem she had written in the Mercury News on Thanksgiving Day.

Durscher asked Don Miggs, lead singer of Miggs, to set Kaitlyn's poem to music, and 5,000 CDs were made and sold at the concert as a fundraiser. Most of the CDs, priced at $10, were sold on Saturday, volunteers said.

The free concert was a family affair, and clear skies and a warm March sun helped set the tone for the 500 to 800 people who attended. Many people spread out blankets on the grass in the courtyard as they listened to the sweet sounds of Ama, Courtney C. Patty, SweetDuration, Rachel Lauren and Miggs.

``What a wonderful day in San Jose,'' said San Jose Vice Mayor Pat Dando, who spoke briefly to the crowd. ``I can't think of a better day to come out and celebrate the birthday of Kaitlyn.''

Dando said Kaitlyn told her she wanted to be the first woman elected president of the United States and added, ``I hope she gives me a few years before she starts running in local politics.''

Kaitlyn's parents, Bradshaw and Kerry Langstaff, started to cry as they thanked the crowd and all the people who have helped them since Kaitlyn became ill. Both of them were laid off from their Silicon Valley marketing jobs the year before.

All the help and the donations have ``enabled us to take care of her and it's just been phenomenal,'' her father said.

The day also included poetry readings from a contest organized by Don Altier, who volunteers at Kaitlyn's school, Forest Hill Elementary School. Altier suffers from Lou Gehrig's disease and came up with the idea for the poetry contest after learning about the concert.

``When my disease was diagnosed 10 years ago, I was told I had about a year to live,'' Altier said. ``I'm still here and Kaitlyn's still here. My message is, `Don't give up. Don't ever give up.'''

One of the poems, written by Yadira Nunez, 9, focused on Kaitlyn's courage in refusing to give up.

``Courage is what kept her alive,'' Yadira wrote. ``Courageous is what she is.''



Kaitlyn's parents have set up a Web site that includes Kaitlyn's poetry and updates on her condition. View it at www.kaitlynlangstaff.org .