BATHURST joined around 20 events across the globe on Sunday to help raise money for research into a rare and fatal condition, which affects around 40 children in Australia.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
Sanfilippo syndrome is caused by a enzyme deficiency and is a progressive and fatal disease for which there is currently no effective treatment or cure.
Life expectancy for those with the disease is between 12 and 20.
But yesterday Bathurst joined communities across the world in a bid to raise money to fund research into the condition by hosting the Hidden Gems Golf Day, which was organised by local golfer Jane Williams.
By late Sunday the event was on target to raise in excess of $20,000.
Founder of the Sanfilippo Foundation, former Bathurst woman Megan Donnell, became involved in the fight against the disease after she and her husband Allan received the devastating news their two children Isla and Jude suffered from the genetic disorder.
But the couple refused to give up hope, and established the foundation with the aim of raising $1.1 million in the next 12 months which will fund a life-saving clinical trial scheduled for 2015 in the United States.
This trial is the only hope for Isla and Jude, and the 40 other Australian children living with the condition.
Speaking at the golf day on Sunday, Mrs Donnell said she was overwhelmed with the support the Bathurst community had shown.
“It’s been a great day. We had around 120 people on the course and we’ve got another 123 people coming tonight [for a fundraising dinner],” she said.
“The outpouring of support has been absolutely amazing.
“Coming back here [to Bathurst] reminds how very special the Bathurst community is.”
Mrs Donnell brought Isla up for the event, while Jude remained in Sydney with family.
She said the children are doing well at the moment, but as parents she and Allan were always nervous about any signs of the disease progressing.
“You’re always worried about every little thing,” she said.
But if there is a positive to come from the tragedy of her children’s diagnosis it’s the support the foundation has received. A similar golf day in Manly last week raised $30,000.
Mrs Donnell said while the overall aim of raising $1.1 million for the clinical trial was overwhelming, she said the foundation remains optimistic.
To make a donation to the foundation, go to www.sanfilippo.org.au.
