Mother Who Lost All Seven Children to Rare Genetic Disease Urges Research
Mother Who Lost All Seven Children to Rare Genetic Disease Urges Research

Sharon Bernardi, from Sunderland, lost all seven of her children to a rare genetic disorder called Leigh's disease, which affects the central nervous system. The disease is caused by a defect in the mother's mitochondria, the cell's power plant. After years of unexplained infant deaths, doctors finally diagnosed the condition when her fourth child, Edward, began having seizures at age four.

Edward defied predictions that he would die before age five, surviving until 21. However, he suffered from chronic pain and dystonic spasms in his final year. Sharon's other three children after Edward died within hours or days of birth, except for Edward himself. Her mother had also experienced three stillbirths before Sharon was born, and extended family members lost eight more children.

Sharon now supports medical research into mitochondrial replacement therapy, which would allow defective genetic material to be replaced by DNA from another woman. 'When you see somebody in pain you don't want to see somebody else in pain,' she said.

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The couple faced accusations of selfishness for continuing to try for a healthy child, but Sharon insists: 'I don't think I am selfish. I wanted my child to be healthy.' After their last child died in 2000, they stopped trying.

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