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The Curse of Baird Hall

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The Curse of Baird Hall

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He found out she danced ballet. The first time Maggie brought Anthony home, before they could play Mario Bros. All I wanted was to be with Maggie. She went off to Mercer University in Georgia, to study psychology. He enrolled at the University of South Florida, to major in business. They started planning a life together: good jobs; a comfy house with a big backyard; two cats, at least. They were going to camp with fireflies in Tennessee, hike along fjords in Norway. And he longed to be the father he never had. They could adopt. Plenty of kids needed families. She was faithful about using birth control.

So when she missed her period in the spring of , she was shocked. A doctor confirmed the pregnancy. She and Anthony were horrified. And overjoyed. They worried for two months, until they learned they were having a girl. Of course, she would be beautiful, like her mom. And as brilliant as her dad. She kept obsessing about the curse. She felt guilty for even daring to have a child. What if she was a he? When she was five months pregnant, Maggie demanded another sonogram.

It took a long time to find the heartbeat. Maggie started weeping. Anthony felt sick, but he tried to console her. Weeks later, the results confirmed their fears: Maggie was a carrier of the disease, and their child had the defective gene. Her family was furious. By then, it was too late for an abortion. Doctors told her she could have the fetus taken out right away or try to carry it to term. She had become attached to the life inside her. She knew this was the only chance she would have to deliver a child. She wanted to meet her son. She refused to have a baby shower.

She was sure she would never be able to bring her boy home. When their baby was born, on Dec. He would never be able to eat, sit up or cry out loud. We have to try to keep him alive. Doctors at St. Then nurses swept him away in a sea of towels and tubes, out of the dark delivery room, into the bright hall. For the next week, they hovered over his plastic cube in the neonatal intensive care unit, willing him to move a finger, wiggle a foot, at least open his eyes. They stared at his black curls, long eyelashes and pale lips.

They counted his perfect toes. They gave him a name, the name of a fighter, a leader: Lincoln. In the hospital, Maggie and Anthony read everything they could find about the diagnosis. Doctors had learned so much in the years since Adam had died. The broken gene is called MTM1 and is carried on the X chromosome. Since girls have two X chromosomes, the good one generally overrides the bad. But boys only have one X chromosome, so if the gene is defective, they inherit the disease.

Only one in 50, boys has the condition. The only way to diagnose it is with a muscle biopsy. The disease prevents production of a protein called myotubularin. They had no idea that, while their son was tethered to machines in Florida, researchers on the other side of the country were studying the same condition in animals — and fixing puppies that had been doomed to die. For the first time in nearly two decades, the federal government was considering approving controversial treatments that would alter human DNA. Could Lincoln live long enough for science to come up with a cure?

Maggie got to hold Lincoln for the first time when he was 8 days old. Nurses untangled all his wires, moved the machines and lowered him, gently, into her arms. She sat as still as she could, careful not to jostle the spaghetti-sized lifelines taped to his face and belly, terrified she might hurt him.