Raffle raises money for fight against insidious disease

Local family’s bid to cure young son’s rare disease

AN online fundraising raffle organised by the family of a three-year-old Sale boy will help raise money for important gene therapy medical research.

Little Jerry Ong was born with a rare genetic disease, and his parents Dave and Bess are on a mission to improve the outcomes for their son and others like him.

Jerry has a condition known as SPG50 – associated hereditary spastic paraplegia – a mutation of the AP4M1 gene.

It is a progressive condition that will soon rob him of his hard-won ability to crawl and to walk, as spasticity takes over his limbs.

He may never speak, and his brain will continue to deteriorate.

Jerry’s courageous parents are raising money to support research and a clinical trial by Dr Leszek Lisowski from the Children’s Medical Research Institute in New South Wales.

So far they have raised almost $60,000, and are hopeful that ground-breaking gene therapy can help to reverse the disease’s progression and save their son’s life, and the lives of other sufferers.

Bess said she and her husband had been moved by the Gippsland business community’s support so far, especially given the difficult challenges facing the world.

Many have donated holidays or products, and the prize pool has grown to more than $4000.

The prizes include weekend accommodation at Phillip Island and a selection of meal, clothing, toy, electrical, hair and book vouchers from local stores.

“I really think it’s a testament to the good and kind people of our area to have pulled together so generously for a local boy. We are incredibly moved and encouraged by this in such a stressful economic time,” Bess said.

To buy a ticket and support the important medical research, visit rafflelink.com.au/jeansforjerry.