Helen’s hope for Isla and Jude
A CLOSE bond forged while looking after Isla and Jude Donnell through Family Day Care in Sydney before moving to Coffs a couple of years ago has proven strong for Helen Parr, who is now raising money to help find a cure for the rare degenerative disease they have been diagnosed with.
Isla and Jude, now 5 and 3 respectively, have Sanfilippo Syndrome, a rare genetic disease which means they will not reach adulthood, unless a cure is found. The disease is so rare that it affects just 50 Australian children. As such, it does not receive significant funding from the Government or large pharmaceutical companies.
"Parents Megan and Allan are doing everything they can to ensure this research continues, so a cure is found for this devastating disease - if not for their children, then for future generations," Helen said.
Their mother, Megan, has established the Sanfilippo Childrens Foundation in the hope of raising money for research into a cure.
A trial is being run in the US next year, and with enough money, Megan hopes her children and other Australian children can be involved.
Yesterday, the Sanfilippo Foundation launched a new campaign, Hope for Isla and Jude, with a raft of Australian singers coming on board to help.
Organised by Sebastian Izambard of Il Divo, a cover of Kate Bush's This Woman's Work has been recorded and released by Sony Music, featuring vocals from Darren Hayes, Natalie Bassingthwaighte, Pete Murray, Ella Hooper, Diesel, David Campbell, Alex Lloyd, Christine Anu, Luke Steele, Katy Steele, Casey Donovan, Damien Leith, Marlisa Nathaniel, The Australian Children's Choir, and a special guest performance by Flea from the Red Hot Chilli Peppers.
For her part, Helen will be at the Harbourside Markets this Sunday, selling a range of wooden toys and stocking fillers, plus Christmas decorations, all in aid of the Sanfilippo Foundation.
For more information, go to http://www.hopeforislaandjude.com