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Deniz Safak was 5 years old when he first displayed symptoms of the disease that would later take his life. “He started being sick and had intense, stroke-like seizures,” his mother, Ruth, recalled.

Doctors were baffled by the boy’s condition, and it took months before a diagnosis was made. Ruth and her husband, Erdhal, were told that Deniz was suffering from mitochondrial disease, an incurable condition that is passed from mother to child and can often be fatal.

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