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When Il Divo star Sebastien Izambard, who has three kids with his Aussie wife, heard about the terrifying plight of a loving Sydney family, he knew he had to do something to help. And what better way to raise funds than recruit a few musical friends and hit the studio.
Learning your children have just a few years to live is any parent’s worst nightmare.
But it’s the stark reality Sydney’s Megan and Allan Donnell have been battling since gorgeous Isla, 5, and Jude, 3, were diagnosed last year with incurable Sanfilippo syndrome, a rare genetic disorder that affects one in 70,000 people.
“Finding out they both had this dreadful disease was the biggest shock,” recalls Megan, 40. “It was beyond my worst nightmare. It was completely side-swiping.
“Receiving a diagnosis like that changed every aspect of our lives. Everything was turned upside down, from the hopes and dreams of our kids to how we live our lives.”
While children diagnosed with the disease appear healthy at birth, as the syndrome progresses it’s known to cause hyperactivity, loss of speech, mental retardation, seizures, blindness, dementia and finally death. Life expectancy is about 12-20 years.
Eager to help in any way they could, Sebastien and his famous friends – including Natalie Bassingthwaighte, David Campbell, Damien Leith and Pete Murray – joined the Hope For Isla & Jude fundraiser by recording a cover of Kate Bush’s This Woman’s Work.
All proceeds go to the funding of an American and Australian clinical trial to help find a cure.
Show your support by buying your copy of This Woman’s Work at hopeforisla?andjude.com
“Sebastien and all the artists involved have been incredibly supportive,” Megan says. “I was blown away when I listened to the words of the song. It perfectly encapsulates a family’s desperation.”
You can’t buy your way on to a clinical trial, so there’s no certainty Isla and Jude will be chosen. But Megan and Allan are determined to make a difference – even if it means they can’t save their own kids.
“We’re dedicating our lives to this cause so even if it doesn’t save Isla and Jude, their legacy will live on,” says the brave mum.
“I want my kids’ lives to have meant something. I want to move science as fast as possible so other families don’t have to go through this. We’re so supported – we’re the luckiest unlucky people.
“My greatest hope is the clinical trials work and we see a positive outcome from it. I believe we will.”
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