Sunderland parents lose their seventh child to rare Leigh’s disease

Edward Bernardi with parents Neil and Sharon
Edward Bernardi with parents Neil and Sharon
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DEVOTED parents Sharon and Neil Bernardi are today coming to terms with the loss of their seventh child.

Edward, 21, defied medics with his brave fight for life when he was diagnosed with rare Leigh’s Disease at just four-years-old.

Given just months to live, Edward’s strength and determination saw him become the oldest person in the world to survive the life-limiting disease, which cruelly snatched six babies from Sharon and Neil within days of them being born.

But brave Edward has died suddenly at his home in Sackville Road, Springwell, Sunderland.

Sharon, 44, said: “Unfortunately with Leigh’s Disease there is no cure. When he was diagnosed at four-and-a-half, we were told he wouldn’t make his fifth birthday, but he did. He surprised everyone.

“We always wanted to get him to 21 and although we were always hoping to get him to another milestone, we’ve done that.

“The rest of our children all died within a few hours and days so the fact that Edward made it to 21 shows he was a real fighter.

“When you’ve lost six children, you want to give him everything you can and that’s what we did with Edward.”

Edward’s health started to deteriorate last year and the family was forced to cancel Christmas when he was rushed into Newcastle’s Royal Victoria Infirmary on December 22.

A month later, he was allowed to come home but tragically he was unable to fight back to his usual health.

“He had problems with really painful spasms and they were getting out of control,” Sharon said.

“He was on lots of medication but when he came home unfortunately he had lost his spark and his fight but this was so unexpected.”

Medics believe Edward, who had just started going to the Donna Claire Venture in Seaburn, suffered an epileptic fit, which triggered a fatal heart attack. He died last Tuesday.

“He always had a lot of fight and an amazing sense of humour and would giggle at anything,” Sharon said.

“In the last couple of months we had really missed that.

“He was very unique and we wouldn’t have wanted him to be any other way, he is so special.”

Now Sharon faces a bitter battle to rebuild her life after spending 21 years as Edward’s full-time carer.

She said: “I have done everything for Edward 24 hours a day and it’s hard.

“I keep thinking he should be awake now, I don’t think it’s hit me yet. It’s hard.”

Sharon and Neil would like to thank the paramedics and doctors and nurses who battled to resuscitate the popular former Portland School pupil.