Posted on Sun, Feb. 23, 2003

In Kaitlyn's own words

By Linda Goldston

Mercury News
 

A young Saratoga girl's struggle to be a normal kid despite a debilitating disease will be celebrated at a free concert at Santana Row on Saturday.

Eight-year-old Kaitlyn Langstaff will be the guest of honor for the concert and the debut of a song based on a poem she wrote. Her poem, ``I Am the Same Inside,'' was put to music by Don Miggs, who heads the San Francisco rock band Miggs.

``The concert's going to be really, really cool because music is something you don't have to be able to sing, you just need to hear it,'' Kaitlyn said last week. ``I'm excited because it's something I can do.''

Kaitlyn, who will turn 9 on Tuesday, has 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. 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.

At the concert, volunteers will sell a CD with the song from Kaitlyn's poem for $10. It includes a song from each of the bands that will perform, as well as a song written for Kaitlyn by Robert Berry, a musician and the owner of Soundtek Studios in Campbell.

And Miggs will sing Kaitlyn's poem, which includes the lines: ``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.''

Kaitlyn was at Soundtek Studios when Miggs recorded the song.

``It was weird, just weird. I knew all of the words,'' Kaitlyn said last week. She had a huge smile when she heard the first words of the song.

Friends, neighbors and strangers have stepped forward to help Kaitlyn and her family, including Romeo Durscher, co-founder of Rock 101 Promotions, who organized the concert. ``It's going to be fantastic,'' Durscher said. ``We have something for everybody at the concert, music-wise. It's a free event for all ages.''

Kaitlyn's mother, Kerry, said the family is thrilled about the concert. ``We're really viewing this as a celebration of life and bringing the community together because it's been almost a year and Kaitlyn is still here,'' she said.

Despite being hospitalized twice more since November, Kaitlyn has devoted herself to overcoming her illness.

``She went to school last week for the first time without us,'' Kerry Langstaff said. ``It was just her health aide, and that's pretty major.''

And, after recovering from recent surgery on her airway, Kaitlyn has been able to eat small amounts of real food. ``She tried cookie dough ice cream and had a chocolate heart on Valentine's Day,'' her mother said.

Kaitlyn became ill while on a family trip in April last year. Doctors believe Kaitlyn may have had an extreme allergic reaction to a medication. She spent 110 days in four hospitals and was near death numerous times. Her illness hit the family doubly hard because both parents lost their Silicon Valley marketing jobs the year before.

The family has received more than 800 cards and letters of support from the public since her story and poem were published in the Mercury News on Thanksgiving Day.

``In so many of the cards and letters we got, people wanted updates and information on Kaitlyn, so we set up a Web site,'' Kerry Langstaff said. The site, www.kaitlynlangstaff.org, includes her poems, as well as information on fundraisers and events featuring Kaitlyn.

Another fundraiser for Kaitlyn will be held March 22. Saratoga High School students will put on a benefit fashion show for students at 3 p.m. and for families at 6:30 p.m. Tickets, which will be sold at the door, are $25 for adults and $15 for students.