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Craniofacial syndrome
He had his first major surgery when he was 8 days old. He's had about 50 operations in all, including one in which he lost almost all his sight. About twice a year, until he stops growing, around 21, he"ll have to have his skull cut open and reshaped, to relieve the pressure inside his head. Feller marvels at the skill and fearlessness of the doctors in Texas who operate on him, doctors who have kept him alive and made him look so much better. Ref. Source 6