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LAST UPDATE: Tuesday February 10, 2015 01:10PM EST
- July 21, 2008
- Vol. 70
- No. 3
Gone Too Soon
Ex-West Wing Actress NiCole Robinson Lost Her Son to a Rare Disorder. Now She's Fighting to Help Others
But Lincoln's life was cut short. Last fall, at just 47 days old, he died of a rare genetic disorder—a disease that Robinson, 36, and her husband, Craig Snyder, 46, a partner in a political consulting firm, knew all too well. In his previous marriage, Snyder had lost two babies to Alveolar Capillary Dysplasia (ACD), a fatal lung disorder with only 139 known cases (see box). But Snyder and Robinson, who wed in '03, already had a healthy daughter, Shirley, 3, and doctors believed that the odds of their having a baby with ACD, then thought to be caused by a recessive gene carried by both parents, were extremely low. "We thought we were in the clear," says Snyder.
Lincoln seemed to be doing fine until he was 5 weeks old, when his formula intake "slowly decreased to the point where he wasn't eating," says Robinson. "I didn't want to believe it was what I had dreaded." Doctors initially thought there was a chance the problem was a viral infection, not ACD. Over 10 days in intensive care, "NiCole would sing to him and stroke his hair and we played sounds of his big sister's voice and the pets barking," says Snyder. Robinson recalls how they would shape his hair into a Mohawk, "so he was a little warrior." Finally, on Sept. 5, 2007, says Snyder, "we held him in our arms and said goodbye."
Their devastation was beyond measure. "Each little thing of his I packed away almost ripped my heart out," Robinson says. For the New Yorkers, passing by Lincoln Center or the Lincoln Tunnel and even seeing Lincoln Town Cars reminded them of their loss. They consulted professionals on how to explain Lincoln's death to his big sister Shirley, who was 2 when he died. "We showed her a picture of a beautiful garden and said that when people die, they go to this garden and they can't come back," recalls NiCole. "It is okay to miss them and it is okay to be sad, but Lincoln is happy there."
They also realized that the best way for them to heal was to try to keep other parents and children from suffering as they had. Eight days after Lincoln's death Robinson and Snyder started 3Angels Memorial Fund for ACD Research, which supports scientists trying to find the gene that causes the disease and create a prenatal test. (Because of Lincoln, researchers now believe the ACD gene may be passed on as a dominant trait even without affecting the parent who passed it on.) West Wing costar Kristin Chenoweth hosted a benefit concert for the foundation in April and lobbying by 3Angels led the Centers for Disease Control to issue a grant for $250,000 to help educate doctors about the disease. "I realize that my son had a purpose," says Robinson. "I feel lucky to be Lincoln's mother."
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