Transplant Gave Hope--Disease Took It Away

Odd as it might seem, Steve and Cathie Knapp were thrilled to be confronted with the cost of sending their son to college.

Truth is, even though he was a straight-A student, they never allowed themselves to dream he would make it that far.

Danny Knapp was born with cystic fibrosis, a genetic disease that attacks the pancreas and lungs, killing many patients just as they are approaching the threshold to adulthood.

But when the 16-year-old computer wizard got a new pair of lungs last September, allowing him to breathe again without effort or pain, the Ojai couple started thinking that maybe, just maybe, he would beat the death sentence handed him at birth.

He would not.

Seven months after the transplant--seven good months when Danny earned a driver's license, set up a bank account and even landed a part-time job--he lost consciousness and never woke up. He died April 13, another casualty of the No. 1 genetic killer of children and young adults in the United States.

"I started thinking because everything was going so good, he might live to see a cure," said Cathie Knapp, picking up now where her son left off in the battle against the disease.

"But that didn't happen, and [a cure] might not happen for a long, long time," she said. "Unfortunately, most of these kids don't have a whole lot of time."

There was a memorial service for Danny last weekend, an opportunity for family and friends to share stories about a kid who was good at math, loved to play chess and had a flair for writing short stories and poems.

They talked about a boy on the verge of manhood, an average teenager remarkable in his fight against a phantom opponent, a disease inching closer to a cure but still killing at will.

And they talked about the need to keep up the good fight, to raise money for research and to urge people to become organ donors, because there is no telling when someone will need a used heart or a second-hand set of lungs.

"There is so much that people can do that they don't realize," Steve Knapp said. "There are so many gifts they can give."

Some habits are hard to break. Even with Danny gone, Cathie Knapp still slips into his bedroom each morning and powers up his computer. As it hums to life, a photo of Danny materializes on-screen, a raggedy-haired kid appearing like a vision on a narrow stretch of white sand beach.

In recent years, the computer had become Danny's window to the world, a way of reaching out and making friends even if his illness kept him out of school and in the house.

So it's no surprise that a flood of e-mail poured in when he died, kind words and condolences from faceless online friends who had sat shoulder-to-shoulder with him in a virtual world of chat rooms and online games.

Many of Danny's friends didn't even know he was sick. And they probably wouldn't have known how sick even if he had told them.

Although doctors identified the condition 60 years ago, cystic fibrosis is overshadowed by a host of other ailments that have more name recognition and financial support. Steve and Cathie Knapp knew little about it when Danny was diagnosed.

"Believe me," Steve Knapp said, "you become a quick study."

A former poster child for the disease, Danny was frequently in and out of the hospital, his life ruled by doctor visits and daily breathing treatments. By last fall, he was so sick he had to be hooked up to an oxygen machine 24 hours a day.

Fearing that he would not make it through another cold and flu season, doctors arranged for him to undergo a lung transplant, a radical procedure reserved for the sickest patients.

Almost immediately, a new world opened up. For the first time in years, Danny was able to ride his bike into town. And after he got his driver's license, he arranged a part-time job at the computer training center in Oxnard where his mother works.

"He was only able to go one day," Cathie Knapp said. "But the last thing he said to me before he went to the hospital was to make sure to tell [his boss] that he would be back to work. You know how teenagers are--they think they are indestructible."

It is still not known exactly how or why Danny died. Maybe it was complications from the transplant. Maybe it was a reaction to some new medication. Or maybe his body simply gave out, worn down by a lifetime of battle.

"We have made tremendous advances, but there is still a way to go," said Dr. Chris Landon, Danny's Ventura pediatrician. "Danny got another [seven] months. But the truth is that was only a bridge; it's not a cure."

The truth about cystic fibrosis is that a cure could be around the corner. Or it could be years away. Or it may never come at all.

Advances in treatment have boosted the mean survival age to 31, but it still affects about 30,000 people in the United States, with 1,000 new cases diagnosed each year.

Scarier yet is that one in 29 Americans--more than 10 million people nationwide--is an unknowing carrier of the defective gene that causes the disease.

New drug treatments have reduced respiratory infections and helped patients breathe easier. And scientists are figuring out ways to cure defective cells.

"There are a lot of reasons for optimism," said Robert J. Beall, president of the nonprofit Cystic Fibrosis Foundation in Maryland. "We have many patients go on to complete college, have children and launch careers. It's still not good enough, but it gives us a lot of hope."

Like so many parents of youngsters with cystic fibrosis, there was a time when Steve and Cathie Knapp held onto that hope, clung to it like survivors of a shipwreck holding onto anything that floats. All that hope isn't gone. It just transfers to the next sick kid, and then to the one after that.

"I remember thinking early on that if we worked really hard, Danny could make it until he was 10," Cathie Knapp said. "Getting to 16 was outstanding, really. That was extra. He was really a neat kid, and I know if a cure couldn't be found in time to save him, he would have wanted one to be found for the next kid in line."