Mom Loses 7 Children to the Same Genetic Disorder
Within hours and days of their birth, mother Sharon Bernardi lost 6 kids to a genetic disease.
The inherited disorder called Leigh’s Disease, instantly took away her 6 kids, but allowed her oldest son Edward to live until he was 21.
“People ask, what was different about Edward?” she tells BBC. “How come he survived as a baby when he had all the problems that would later build up? I don’t know but Edward had some fight in him. He was fighting to survive all his life. I think that was in his personality.”
Unfortunately, last year, Edward suffered from a heart attack and passed away, pushing Bernardi to fight for a cure against a disease that has affected her entire life.
“It will be too late for me,” she tells a research fund, “but it would be an amazing thing if scientists and doctors can prevent this in the future.”
Leigh’s is a rare disorder that affects the nervous system and causes sharp, violent seizures and premature death. Bernardi inherited the disorder from her mother who had had three stillbirths before Sharon was born.
“It’s hard when you want to have a family, and you finally have a baby like Edward, and you think you’re finally getting somewhere with your hopes and your dreams, and then somebody tells you that at any moment your child is going to die,” Bernardi said sadly.
A study is in progress in Newcastle University that would allow scientists to separate any defective genetic material in the human egg, allowing genetic diseases such as Leigh’s to be prevented prior to birth.