Three-year-old Jakobi Bays has thanatophoric skeletal dysplasia, a rare form of dwarfism. His mother, Ashequka Lacey, has become an activist, building greater awareness of the condition.
Nearly four years ago, Ashequka Lacey was faced with a decision that would change her life completely.
, a rare form of dwarfism. She learned of the dozen or so children living with thanatophoric dysplasia in the United States and others around the world. "They told me I would have him early; he could die in utero because of his condition. Jakobi was due on the 18th; he came on the 17th, full term. They said he wouldn't cry when he was born; he was screaming," Lacey said.
"We argue a lot. We scream at each other. He licks his hand and touches me knowing I don't want him to do it," his brother, Ameir Lacey, 12, said."He's a cool kid, though. But sometimes he is irritating."