Loss of daughter leads mom on new mission
Raises awareness of SJS, caused by reaction to some pharmaceuticals
BY TOM CAIAZZA
Staff Writer

JEFF GRANIT staff Darlene Kiss sits with a photo of Heather Rose, the daughter she lost to SJS three years ago. Kiss raises money for the SJS foundation and counsels families of SJS victims.

Darlene Kiss’ house is an exercise in chaotic organization. Her front porch is the temporary home of old strollers and giant cardboard boxes. Sprawled out on the carpet of her living room are countless toys and games, and two small children playing fiercely with a young children’s version of Operation.

On the television Barney the purple dinosaur is building a rocket to the moon, fleetingly occupying the gaze of the youngsters who quickly readjust their attention to the flashing lights and colors of toy after toy.

On the wall above the entertainment center, half-hidden behind mounds of worn-out video cassettes and an old video rewinder is a picture of Heather Rose.

“She would be 6 years old now,” Kiss said while watching Trevor, 21/2, and Heidi, 18 months, play nicely together.

More than two years ago, Darlene and Andrew Kiss lost their daughter, Heather Rose, to Stevens-Johnson syndrome (SJS), a severe skin disease caused by adverse reactions to many prescription and over-the-counter drugs, such as ibuprofen. Darlene Kiss gave Heather three doses of Children’s Advil over the course of a week, and less than a week later she was gone.

“It was only a week after we brought Trevor home from the hospital,” she said. “We were right back in there again with Heather.”

According to the Stevens-Johnson Syndrome Foundation, SJS and toxic epidermal necrolysis (TENS) are severe drug reactions prevalent in children that can cause blindness, lung damage, chronic obstructive pulmonary disease and can be fatal if not quickly identified and treated.

For Darlene and the Kiss family, life has become a crusade against this disease — a crusade of awareness, a crusade of consolation, and most of all, a crusade of love.

Awareness

Kiss, a stay-at-home mom, spends hours daily raising funds for the SJS Foundation. With just a dial-up modem and a computer, she raises nearly $300 per month for the foundation by selling donated items in the most unlikely of places, eBay.

“I spend about an hour every morning, and two hours while my kids are napping doing this,” Kiss said. “People donate the items and I sell them on eBay.”

The products range from used strollers to toys, and any other items that might make money for the foundation. Kiss spearheads a group of five women that work together, packing, shipping, selling and acquiring these items and with each purchase she includes the SJS Foundation newsletter.

“I’ve had people who have bought our products donate stuff to us to sell,” Kiss said. “EBay sellers donate stuff, but most donations come from the area.”

The unnamed group has received a lot of support from the community, Kiss said, and donations have gone beyond simply items to sell. Some of which even comes from the winning bidders of the auctions.

“I’ve had many people donate more money to go to our packaging and to doing all that,” Kiss said.

The community has given to the family, and Kiss has been trying to give back. As the secretary of her local MOMS Club, a national organization of stay-at-home moms who do community-service projects and provide social interaction for children, Kiss has been intricate in providing guest speakers, fundraisers, and community-outreach projects.

Most recently, the MOMS Club visited the Victoria House nursing home in Matawan, youngsters in tow, and sang Christmas carols and holiday songs to the residents. Kiss said that a lot of these people will not get many visitors this season, and having young children around seemed to have helped.

Kiss’ sights have gone beyond her locale. Last February, she went national.

Darlene and Andrew Kiss filed a lawsuit in January against Wyeth Consumer Healthcare, the makers of Children’s Advil, for wrongful death, negligence, defective design and failure to warn about the devastating effects of Advil on their daughter.

A month later, Kiss and her oldest son Tyler, 8, went to Washington to lobby the FDA for better warning systems on over-the-counter ibuprofen products, a move that got them press and television exposure and featured on the “Today” show.

Neither Wyeth Consumer Healthcare nor the Food and Drug Administration could be reached for comment on this story.

Despite the press and exposure, the outcome of the lawsuit is going too slow for Kiss, leaving her in a limbo that is not likely to be resolved soon.

“It’s been very quiet recently,” Kiss said. “That makes us very nervous.”

The Kiss family has received letters from their lawyers assuring them that the lawsuit is fine, but the mother is eager for some more exposure about the disease that took her daughter.

“I’ve been wanting to talk to the press,” she said. “I want to keep up the profile.”

Consolation

Heather was first treated at Monmouth Medical Center in Long Branch, where she was diagnosed with SJS. She had burns on her body that were caused by the scarring of her pores and the inevitable heat trapped inside.

She was transferred to St. Barnabas Medical Center in Livingston. There she spent five days receiving blood transfusions and being wrapped and rewrapped in special protective gauze that is designed not to stick to the skin.

“Her eyes were scarred shut,” Kiss said. “They were putting drops in her eyes, but by that point we were pretty sure she was completely blind.”

All through this, there was hope for Heather’s recovery. Kiss said that preparations for a six-week rehabilitation program were being made in which Heather would relearn how to walk and function on her own.

That hope was short-lived. Kiss was told that Heather’s condition was worsening and that she would have only 48 hours left. One minute they were preparing this six week-program, and the next, they were saying their goodbyes, Kiss said while watching Trevor play at her feet.

Kiss had Tyler record a message to his sister because she did not want him to have to see her that way.

“He got to say his goodbyes,” Kiss said, “and every time we played the tape, all her vitals would go up.”

Within days Heather was gone.

It would not be unreasonable for Kiss, now two years later, to not want to relive that time. However, in an attempt to empathize, console and comfort, she has opened herself up to the families of other victims of SJS.

She receives phone calls monthly from the families going through the same ordeal she went through. She tries to counsel and help them, all the while reliving Heather’s last days. She has not gotten a call this month, she said, which is a consolation to her, because it means no one has needed her.

Kiss is keeping herself busy. With three young children, it is almost impossible not to, especially when tacking on her extra responsibilities.

The boxes on the front porch will soon be filled with the donated strollers and shipped out to the winning bidder of the eBay auction. Normal life has returned.

Heather is not far from her mind, though.

“I keep thinking one day I’ll get a time machine and go back and not give her the Advil,” Darlene said. “Although, I would never have had Heidi; we were done having children after Trevor was born.”

Darlene does her best not to fret about the past. She has a positive outlook on the future and the things she is doing in the name of her daughter.

“It’s nice to know that though my daughter’s life was taken, I was able to help hundreds of kids,” she said. “These are our future doctors and lawyers and presidents; they rely on us.”

Despite the hectic pace of every day life, Darlene and Andrew Kiss have kept a little bit of Heather alive. Heidi’s middle name is Rose, after her big sister.