January 27, 2002
by REG GREEN
| Five thousand feet up in the Swiss Alps of Anzere, Switzerland, 44 children, ages 6 to 18, from nine countries around the world were doing something that at one time in their lives was beyond their wildest dreams: Racing on skis and snowboards down a 35 percent slope on thin snow and ice, at the very limit of their powers. |
High above where I stood, the little figures hurtled into view, rounded the gates with that peculiar mixture of physical force and grace that gives the sport its fascination and shot across the finish line, poles waving and families cheering frantically. Until a week before many of them had never been on skis. Some, from winter sports centers as unlikely as Jerusalem and Queensland, had never seen snow.
"They're doing fine, aren't they?" said Dr. Claude Le Coultre, head of pediatric surgery at Geneva Children's Hospital. "It's hard to remember that at one time they were almost dying in an intensive care unit."
Everything about this competition was quite normal for this beautiful winter sports-oriented region, with one exception: It was just for children who had been so desperately ill that only a transplanted organ had saved them.
Some were born yellow, some ashen grey, some a frightening shade of blue. "Even her tears were yellow," one mother said. As they grew older, many had little matchstick limbs that could scarcely support their weight. Some had to be carried everywhere. Many simply stopped growing and lay in bed day after day, wasting away.
At the time of his fourth birthday, one of them had never walked. Another stopped breathing and was revived only by being put on a ventilator. For some families the blow came without warning. Children who had led a perfectly healthy life were suddenly struck down by a virus and given only a few days to live.
For all of them, the sole cure was a new heart or liver, kidney or lungs. These can be donated normally only by the small number of people who suffer brain death and whose organs can be kept in good working order for a short while using life support. They are scarce in virtually every country in the world.
Happily for the children in these races, each of them had found a donor. For a few it was one of their own parents, like Mike Thomas, a strapping firefighter from Australia, who gave his son a kidney and who radiates happiness as though it is he who has received a priceless gift.
Most of them, however, had no choice but to wait until some other family, though devastated by the death of one of its members, found the courage and compassion to donate the organs to complete strangers. But so many families cannot bring themselves to do this that every year in the United States alone 7,000 people, many of them young, some just babies, die on the waiting list.
The competition was the brain-child of 39-year-old Liz Schick, a British-born mother of two living in Switzerland and herself a liver recipient, who wanted to give something back to the world in return for it having given her back her life.
It was supported by the enterprising World Transplant Games Federation, which has been running international athletic events for transplant recipients since 1978, and by Fujisawa, the drug company, to show in the most vivid way possible that a transplant does not merely prolong life but enables patients who have been terminally ill to do just about anything normally healthy people can do.
No one watching could doubt it. The eager competitiveness, the skill, even the times clocked were indistinguishable from any random group of the same age.
For me the event, held earlier this month, stirred deep emotions. It was named the Nicholas Cup in memory of our own son, 7-year-old Nicholas Green, who was shot in an attempted robbery while we were on vacation in Italy seven years ago and whose organs my wife, Maggie, and I donated to seven Italians. Without a transplant two of them would be blind and most of the others, if not all, dead.
Seven years later all seven are living normal lives. Even better, organ donation rates in Italy have more than doubled since then, so that literally thousands of people are alive who would have died. We never forget Nicholas, of course, but the thought that even in death his story made that much difference helps make the loneliness easier to deal with.
The cup, huge and gleaming and looking like something you might compete for at Wimbledon, was won in flying style by Romain Basset, an 11-year-old Swiss boy, whose parents were aghast to learn two years ago that a localized pain he'd complained of was not a temporary problem but end-stage kidney failure.
But the real triumph for all these children is being able to compete at all. Think of the roller coaster life of 9-year-old Phillip Bates, from Brandenburg, Ky., who has a cleft palate and was abandoned by his parents at the hospital where he was born. Adopted by Terinda and Robert Bates, he sucked baby formula into his lungs when he was a few weeks old and the pulmonary fibrosis and pneumonia that followed brought him to the very edge of death.
At 1-year-old the lungs that saved him were donated by a family who had just lost their own child. Now, showing off in his Harry Potter glasses, wheedling an extra snowboard session out of his adopted mother or going from group to group at the ski camp picking up gossip, he savors every aspect of life as if he can scarcely believe anything could taste so good.
Looking at his small face, alert with curiosity and mischief, I wonder, when a family is faced with the decision to donate, how there can be any possible doubt about what is the right thing to do.
Last modified:
20 February, 2002
