A Series of Unfortunate Events

Edward and his parents on his 18th birthday

After losing 6 children to the same disease, Sharon and Neil Bernardi never wanted to lose yet another hope. They did all that they could just to keep their son alive. However, they still lost their fighter to the disease on 1st March 2011. Edward Bernardi, aged 21, was the oldest surviving patient of the deadly mitochondrial disorder known as Leigh's Disease. He was diagnosed with the disease when he was four and a half year old and things were predicted to be gloomy. However, something was different about Edward. He was a miracle who pushed through the predicament and survived way longer than any person could expect. He lost a sister when he was 11, who was not as fortunate as he was, as she died from a condition hours after birth.

Sharon and a 1-year-old Edward

'When you've lost six children, you want to give him everything you can and that's what we did with Edward.'--Sharon Bernardi

Just when it seemed like things were looking better for Edward, after surviving through many years past the expected lifespan of 5 years, his condition started to worsen and he was admitted to the hospital in December 2010. According to his parents, he seemingly lost all hope and determination after being discharged from the hospital in January 2011. Despite the lack of willpower observed in Edward, nobody expected his sudden departure just months later, especially his parents. It had been extremely tough on the parents to have lost their seventh hope, the last that they thought could have lasted longer than it did. Sharon, who was a full time carer to Edward, expressed that she still could not accept the fact that Edward is no longer around. 

Sharon and Edward Bernardi

"I keep thinking he should be awake now, i don't think it's hit me yet. It's hard"

Edward was the eighteenth child in the family to have lost a battle with Leigh's disease. Sharon's mother had experienced a loss of 3 children and her extended family lost 8. Incurable as it seems right now, the Bernardi family hope to see more advancement in the medical field to help save lives from the disease, and to prevent more devastation that future generation parents might experience, the same way they did. 

Sharon and the 11-year-old Edward

'It will be too late for me but it would be an amazing thing if scientists and doctors can prevent this in the future.'

 Interview with Sharon Bernardi about Edward