Jan 15, 2004

Stricken 9-year-old leaves a
community to mourn and
celebrate her life

By Julie Davis Berry
Executive Editor

Kaitlyn Langstaff, the 9-year-old girl stricken by a severe allergic reaction to a common children’s over-the-counter medication 20 months ago, died a week before Christmas telling her mom that she “wanted to go to Heaven.”
The spunky little girl whose struggle inspired a large outpouring of support from the community, could be described by many adjectives: smart, funny, pretty, tenacious, outgoing and most important, inspiring.

She had been in and out of the hospital this year due to the fact that her lungs were so damaged by her disease that they were deteriorating. Kaitlyn was stricken with toxic epidermal necrolysis, a severe form of Stevens Johnson Syndrome, 20 months ago while on a trip to central California with her family. The disease attacks the skin and mucous membranes and causes lesions that resemble second-degree burns.

The family had hoped that Kaitlyn would beat the disease and eventually have cornea transplants and other operations to restore her vision and breathing. But this summer the disease quickly progressed. The Langstaffs are just happy for the time they did have with Kaitlyn.

“Most people who die of this disease usually die within the first few days due to respiratory failure,” said Kaitlyn’s mother Kerry. “So, it was a miracle that she lived as long as she did. Towards the end it was very peaceful and she just kind of slowed down and then she died.”

School had always been very important to Kaitlyn and she attended class at Forest Hill Elementary School, albeit infrequently, up to a week before she died. Her mother said that days before she died she was worried that she hadn’t finished a book report.

Kaitlyn and her family were not the types to sit around and mope about the tragic turn of events. The family arranged many fun outings for Kaitlyn when she was strong enough to venture out, like a visit with the Dixie Chicks after a concert and a visit with Kristy Yamaguchi.

“As sick as she was she had some really good days this fall,” said Kaitlyn’s father Brad. “On Halloween she went to the Halloween party at school and then she went out trick-or-treating at night. And, she went to “The Nutcracker” the Friday night before she died. But, in between she’d be very weak and have trouble breathing and she was on the ventilator all the time.”

The day before she died she looked at her mother and said, “I feel so loved.” The next day Kaitlyn looked at Kerry and said, “Mommy I want to go now, I want to go to Heaven.”

The family held a private funeral for family and close friends shortly after she died and almost 300 people attended. On Jan. 17, there will be a public memorial service that Kerry and Brad describe as a celebration of Kaitlyn’s life.

“I plan to have live music, a balloon release and maybe a butterfly release and a brief open microphone session,” said Kerry. “We don’t want it to be a sad thing.”

Brad and Kerry are learning to get used to being a family of three instead of four. “I feel like we’ve been grieving the loss of Kaitlyn for the past 20 months so in some ways we were prepared. Inside she was the same but she wasn’t the same. We lost part of her a while ago,” said Kerry.

“One of the hardest things to get used to is that we’ve been such a part of the elementary and middle school communities for years and now next year we won’t have anyone at either of those schools. We’ll go to just having one child at high school.”

Whatever their future holds, the couple vows to “have children in our lives.” In fact, Kerry is going to continue being the Junior Girl Scout leader of Kaitlyn’s troop.

According to Kerry, all of Kaitlyn’s friends have been very affected by her death. “I just took her friend Casey out to the cemetery last Saturday,” said Kerry who gave each of Kaitlyn’s friends her bracelets and stuffed animals to remember her by.

The day after Kaitlyn died, the couple boxed up all her medical equipment and donated it to various charities. “We wanted to give back to the community that had given us so much,” said Kerry.

The family drew strength from the many community members who gathered around and reached out to help them while Kaitlyn was sick and also when she died.

“There were so many people who helped us from the school communities to the Campbell Bobbysox community to the YMCA Indian Princesses,” said Kerry.

“The Girl Scout troop organized the food for the reception after the funeral,” added Brad. “And the Indian Princess dads came over the day after Kaitlyn died and took down the wheelchair ramp and cleaned up the yard. It was just incredible how many people helped us out.”

The couple has a lawsuit pending with the maker’s of Children’s Motrin, which will be heard in federal court in San Jose in October.

But for now, the family wants to focus on the good times with Kaitlyn.

Brad, who had been laid off a few months before Kaitlyn got sick, was Kaitlyn’s primary caregiver. “As hard as it was taking care of Kaitlyn everyday, I loved taking care of her,” said Brad, his voice breaking. “It was the best job I could ever have.”

Kerry gains solace from a special experience that happened shortly after Kaitlyn’s death. “We asked all of her friends and family to write Kaitlyn a note and we put them into her casket. And in my note I wrote ‘Kaitlyn make me a rainbow so I’ll know you are OK.’ And when we drove into the cemetery the day of her funeral, there was a huge rainbow in front of the entrance and I just knew that it was from Kaitlyn and that she was OK and in a better place.”

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, CA., 95129. Put “In Memory of Kaitlyn” in the memo portion of the check. Cards may be sent to the Langstaffs at P.O. Box 3731, Saratoga, CA 95070.