Posted on Sat, Dec. 07, 2002

Kaitlyn's spirit inspires kindness

OFFERS OF BENEFIT CD, MONEY GIVEN TO GIRL WITH RARE DISEASE

By Linda Goldston

Mercury News
Inspired by an 8-year-old Saratoga girl's brave fight against a debilitating disease, a music promoter hopes to turn her poem -- ``I Am The Same Inside'' -- into a song, record it on a CD and unveil it at a benefit concert in February.

The CD and concert are the most unusual offers of help for Kaitlyn Langstaff, whose illness has left her unable to see, speak or eat everyday food. But she also has received more than 150 letters with donations from $1 to $1,000 since her poem and her story were published in the Mercury News on Thanksgiving Day. And total strangers have offered to repair her family's damaged van and leaking roof.

``We are shell-shocked, just overwhelmed by the response,'' said Kaitlyn's mother, Kerry. ``We opened them all as a family. It was our chicken soup for the soul.''

Kaitlyn had one word for the response: ``Wow.''

She suffers from toxic epidermal necrolysis, a severe form of Stevens Johnson Syndrome. The disease struck Kaitlyn suddenly in April, an extreme allergic reaction doctors believe she had to a medication. Close to death at times, she spent 110 days in four different hospitals.

Kaitlyn's positive attitude and her family's dedication to helping her prompted the San Jose rock promoter to think about putting her poem to music. Most of the people sending cards and letters were also touched by Kaitlyn's spirit.

``Despite all of the medical things going on with her, she wants to be normal, she wants to be a part of the world around her,'' said Romeo Durscher, who founded Rock 101 Promotions with Erica Weil two years ago. ``That's what touched me the most.''

The disease Kaitlyn is struggling to beat attacks the skin and mucous membranes, forming blisters and lesions inside and outside the body that resemble second-degree burns. Most children who get this severe form of Stevens Johnson Syndrome do not survive.

Kaitlyn's skin has healed but the disease destroyed the surface of her eyes and left massive scar tissue in her lungs and airways. She breathes bottled oxygen through a tube in her neck. She has a feeding tube in her stomach. She mouths words or speaks with an electronic larynx. And she needs a wheelchair when she isn't at home.

In her poem, written on Nov. 11, Kaitlyn wrote that she was ``the same inside,/ as some people can see./ But some people think I'm weird/ because they don't look inside of me.'' She concluded: ``I am the same inside,/ just like a normal kid./ And I want to let everybody know,/ this is what I did.''

When Durscher read Kaitlyn's poem, he said, ``I thought, `Oh, my God, this would be a beautiful song.' '' He has arranged for a local musician to turn the poem into a song that will be recorded on a CD and sold to help Kaitlyn.

``Don Miggs, the lead singer of the band Miggs, is writing a song around Kaitlyn's poem,'' Durscher said. ``We plan on adding a song from each artist who will perform at the concert and make 3,000 copies to be sold at the event.'' Miggs is tentatively scheduled to perform, along with other local artists.

Durscher is still negotiating for a location for the concert, but has set a tentative date: Feb. 22, three days before Kaitlyn's ninth birthday. The ``I Am'' concert, named for Kaitlyn's poem, will be in the afternoon so that children and families can attend.

``The most exciting part is that I get to be on stage,'' she said. And she wants her parents and her sister, Kelly, who's 12, right there with her.

Many of the letters and cards sent to Kaitlyn since Thanksgiving contained donations, ranging from a dollar bill in a hand-made card from a child in San Francisco to a $1,000 check.

Three contractors also offered to repair the Langstaff family's leaky roof, and a businessman wants to help with repairs for Kerry Langstaff's van, which was damaged in a hit-and-run at Kaitlyn's school.

``It continues to amaze us,'' her mother said. ``We are completely overwhelmed by the support and generosity of total strangers.''

Kaitlyn's family was already struggling before she got sick. Both Kerry and Brad Langstaff, Kaitlyn's father, were laid off from their Silicon Valley marketing jobs the summer before. They have yet to find full-time work.

One of the cards to Kaitlyn was from a Sunnyvale woman whose mother had Stevens Johnson Syndrome and has since died. Another, from a San Jose woman, said, ``You have faced so many challenges with dignity and endurance . . . The future, though uncertain for all of us, is brighter because of you.''

There was even a letter from an inmate at Elmwood Correctional Facility in Milpitas. He wrote, ``Kaitlyn, you inspire me to be a better man. Your strength is my inspiration.''

Kaitlyn said the mail and the concert -- and being recognized twice so far while she was out in public -- are making her feel famous.

``I want people to know I won't always be this way,'' she said. ``I know I'm going to get better -- if it takes 50 years.''

Kaitlyn's poem:

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.

By Kaitlyn Langstaff Nov. 11, 2002

HOW TO GIVE A fund has been established to help the Langstaff family pay living costs and expenses not covered by medical insurance. Donations may be sent to Kaitlyn Langstaff, c/o Forest Hill Elementary School, 4450 McCoy Ave., San Jose, Calif. 95130. Checks should be made out to the Kaitlyn Sierra Langstaff Fund.