But here was Lincoln, struggling for breath. Rushing him to the hospital, Snyder felt an excruciating sense of helplessness. Thirteen days later, Lincoln was taken off life support. An autopsy confirmed that he, too, had the disorder, alveolar capillary dysplasia.
ACD, first described in the medical literature only 27 years ago, has defied study. The fact that it is so rare and so lethal has masked its hereditary forms, stymied gene-hunting techniques, and discouraged research funding. Why spend money on a disease known to have killed 114 newborns - ever?
When ACD killed Lincoln Snyder, however, it created an even rarer phenomenon - an unspeakable loss that opened the door to great gain.
Craig Snyder, 46, a lawyer and former chief of staff to Sen. Arlen Specter, is a lobbyist whose clients include hospitals and leading disease-advocacy groups such as Autism Speaks. Robinson, 35, is an actress perhaps best known for her role as Margaret on the TV show The West Wing. The couple have homes or offices (or both) in New York, Philadelphia and Washington.
Soon after Lincoln's death, they created the 3 Angels Memorial Fund for ACD Research to try to find the genetic cause.
"We're definitely draftees. We did not volunteer for this cause," Snyder said in the couple's Center City condo, a 36th-floor aerie with a sweeping view. "But if this tragedy was going to happen to anyone, NiCole and I are the best equipped to make something positive come out of it. We have the money, the network, the experience."
Snyder and Robinson fervently believe that finding the ACD gene is doable within a year. That could lead to a prenatal test, important for couples in their extraordinary situation. But it could also have farther-reaching benefits. It might reveal secrets of lung formation in the womb, shed light on common disease mechanisms, perhaps even explain some cases of sudden infant death syndrome.
At least, that's the hope.
