Posted on Fri, Dec. 19, 2003

I M A G E S

Kaitlyn Langstaff smiled earlier this year in a Campbell recording studio after her poem "I Am" was recorded by the band Miggs. (Karen T. Borchers / Mercury News)

Kaitlyn and band members from Miggs.

More photos...

Disease claims inspiring girl

9-YEAR-OLD SPARKED OUTPOURING WITH RESOLVE TO STAY IN SCHOOL

By Linda Goldston

Mercury News
 

Kaitlyn Langstaff, the Saratoga girl who struggled mightily to be a normal kid despite a debilitating disease, died at home Wednesday night, surrounded by her family and friends.

The 9-year-old, whose apparent adverse reaction to Children's Motrin nearly two years ago left her unable to see, eat or speak without a special device, had discussed what she hoped to accomplish before she died. She told her family Wednesday she was ready to go to heaven.

``Kaitlyn was wise beyond her years,'' said Dr. Catherine Albin, head of the pediatric intensive care unit at Valley Medical Center, where Kaitlyn was hospitalized for six weeks this fall. ``I never heard her say, `It's not fair,' although it is. It's totally not fair.''

Kaitlyn's determination to remain in school for as long as possible despite the effects of her illness made her a celebrity. She received thousands of letters from around the country, and Bay Area schoolchildren held ``Coins for Kaitlyn'' and ``Cookies for Kaitlyn'' fundraisers.

A poem she wrote, ``I Am the Same Inside,'' was set to music and became part of a benefit CD of the same name. It made its debut at a benefit concert in March. A copy of the poem is on her Web site, www.kaitlynlangstaff.org .

Kaitlyn suffered 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 parents, Kerry and Bradshaw Langstaff, sued the makers of Children's Motrin, alleging that it caused the severe allergic reaction that made Kaitlyn sick. A trial is scheduled for October 2004.

Kaitlyn became ill while on a camping trip with her family in April 2002 and ended up spending more than 110 days in four hospitals last year before going home. She required a ventilator to breathe and was fed through a tube.

Kaitlyn was proud that she managed to make it to the first day of the 2002-03 school year.

Earlier this year, she appeared to be improving, but had to go back into the hospital in September. When she was released six weeks later, doctors said she would have been more comfortable remaining in the hospital. But Kaitlyn chose to go home so she could be with her family and try to go to school.

``We relish every day we have with our family,'' her mother said recently. ``We enjoy every mundane thing, doing homework, watching TV. You just don't realize how much everyday stuff is important.''

On Tuesday, she told her mother: `` `I feel so loved.'

``I think she really recognized how many people cared for her and loved her,'' said Kerry Langstaff.

On a trip to Yosemite in April -- where the family had been headed when Kaitlyn became ill -- her father pushed Kaitlyn's wheelchair up steep paths so she could feel the Yosemite Falls spray on her face and touch the rock cliffs. It was that kind of dedication that endeared the family to the community.

Kaitlyn ``definitely had a calling to affect people in the community,'' said Honora LaMotte, her kindergarten teacher at Forest Hill Elementary School, who remained a close friend. ``She taught us all we need to stop and slow down and appreciate each other.''

``Maybe she is a Christmas story after all -- a little like Tiny Tim, in `A Christmas Carol,' '' Dr. Albin said. ``She brought out the talent in others.''

In lieu of flowers, the family asks that donations be made to the Silicon Valley Children's Hospital Foundation, PMB No. 280, 1600 Saratoga Ave. No. 403, San Jose, Calif. 95129. Put ``In Memory of Kaitlyn'' in the memo portion of the check. Cards may be sent to the Langstaffs, P.O. Box 3731, Saratoga, Calif. 95070.