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Evansville Child With Rare Spinal Disease Is Still ‘The Happiest Kid Ever’
Daniele Johnson’s youngest son, Anthony, was born with a rare spinal condition. It’s a diagnosis that changes everything. Even so, “he’s just the happiest kid ever,” she said. According to Children’s National Hospital, about one in 11,000 babies in the U.S. are born with spinal muscular atrophy: a hereditary disease that can destroy nerve cells and affect motor neurons in the brain stem and spinal cord that control everything from speaking to walking to breathing.
Anthony, 3, was born with SMA Type 0. He was diagnosed with a heart defect in utero, and doctors told Daniele her son would have to have surgery on his heart within the first week of his life. Around five days old, they got the results during that surgery that Anthony was positive for SMA. Still, the now-3-year-old is keeping his spirits up.
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