I kept thinking: ‘is my son going to die when he is 11?’

Mother of nine-year-old with rare genetic disorder on diagnosis – and living positively

Nine-year-old Karl Swaine from Lucan, Dublin, has Hunter syndrome, a rare degenerative genetic disorder that prevents his body from breaking down sugar molecules. There are only about 2,000 cases of the disorder worldwide.

“All I kept thinking was ‘is my son going to die when he is 11?’.” Sharon Byrne remembers the fear she felt when she heard her son’s diagnosis of a rare degenerative genetic disorder when he was just two years old.

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