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Fundraiser recognised, Nov 1997
3 November 1997

A family's private struggle becomes a public appeal

Fund-raiser recognised

Stephen Jones still comes close to tears when he talks about his son.

Eight year-old Bret is a survivor of Nezelof Syndrome and it was his battle with the condition which turned his father into an award-wining fund-raiser.

Earlier this month, Mr Jones became the northern suburbs winner of the 1997 Energy Australia Community Spirit Award. It was his efforts to raise funds for children with life-threatening illnesses which brought him the well-deserved recognition.

Born without an immune system, Brett’s condition was diagnosed when he was six months old. “We noticed he wasn’t putting on weight like a normal baby and the doctors said he must have a lactose problem and took him off breast milk. As it turned out, it was only the breast milk that was keeping him alive.

“Then he deteriorated rapidly and looked worse than a skinned rabbit and the buggers sent him home to die.”

Mr Jones refused to accept the doctors’ prognosis and “went and kicked a few shins”. Eventually a doctor came up with the diagnosis of Nezelof Syndrome-only the 20th case in the world.

A bone marrow transplant from his mother, Ros, soon after his first birthday, gave Brett the chance of a normal life. Now at school and a keen football player, his father said proudly: “He’s a medical miracle a hundred times over.”

After watching his son battle and survive, Mr Jones, a cabinet maker, became concerned for other children with life-threatening conditions. Days and nights spent at the hospital after his son’s transplant built up a camaraderie between other parents and the staff.

When Mr Jones was invited to take a bucket to a football match to raise funds for the hospital, he did so willingly. With his elder son, Scott, he raised $2,500 in an afternoon, “and I felt so bloody good I’ve never stopped fund-raising since”.

So started “Kids Like Brett” now a registered charity. Over the past few years, the North Sydney father of three has raised more than $200,000 to purchase life-saving medical equipment for children at The Prince of Wales Hospital, Royal North Shore Hospital and The New Children’s Hospital, Westmead.

Mr Jones, who is keen to get corporate sponsorship for Kids Like Brett, guaranteed that all money raised went towards buying medical equipment.

Donations can be made to Kids Like Brett at 11 Ancrum Street, North Sydney, NSW, 2060.

By Jo Arblaster

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