During one of his countless nights sleeping next to his son Brett’s hospital bed, North Sydney’s Steven Jones was asked if he was interested in attending a local fundraiser, but with a cricket match to attend the next day he compromised with a simple donation bucket. Thirty-four years later, Steven has raised over $1 million for children’s hospital equipment.
When he was diagnosed at birth with the congenital immunodeficiency condition Nezelof syndrome, Brett Jones was only the 20th case in the world. With so much for doctors to still learn and discover about the condition and an uncertain prognosis, Brett was forced into a year of hospital living and constant care, and a further five years in home isolation.
Yet Brett always had his family by his side. And despite the hardship of ongoing treatments, including chemotherapy and the difficult process of finding a bone marrow match – the donor eventually being his own mother, Roslyn – Brett’s dad, Steven, remembers with clarity how often he saw children waiting for similar, life-saving treatment. These frustrations were funnelled into what became Kids Like Brett, a charity for children who needed closer and faster access to life-saving equipment.
Witnessing not only his son’s struggles but other children’s, some as young as two hours old, became Steven’s motivation, proven by each machine he has been able to fund. The Royal North Shore Hospital – which has benefitted from Steven’s work since the beginning – was able to care for a greater number of premature babies the moment they were born thanks humidity cribs purchased by Kids Like Brett.
“The crib was easily smaller than a shoebox… and the baby inside was only two hours old,” Steven says. The clarity with which he can remember each piece of machinery demonstrates the empathy and inclusivity that has saved so many.
What started as case-by-case problem solving soon developed into hospitals reaching out to Steven directly, knowing that he would do everything in his power to help out. Sometimes this meant simply buying back some of the more expensive purchases of the hospital – of which New Year’s Eve BBQ’s, fundraisers at the North Shore Leagues club and generosity from local businesses all contributed. Yet other times, machines were more specific, and in a way, personal. Steven proudly recounts the purchase of an Iron Chef DNA sequencing and analysis machine; a machine that will help identify conditions such as Nezelof syndrome, and thereby helping Kids Like Brett all over the country.
Despite personal hardships, Kids Like Brett continues to funnel ‘100 per cent of all funds raised back into the hospitals,’ not only allowing the charity to grow in strength but elicit an unexpected result. Throughout significant health struggles of his own, Steven credits his son Brett’s profession as a personal trainer as being the key to surviving it all. In a way, Kid’s Like Brett was able to continue on thanks to Brett himself, who has been able to pay back the years devoted to Brett’s health and success. Across the years, father and son have faced life’s challenges together.
With an impressive collection of thank you notes and awards that he hides with humility, one can’t help but notice an wonderful pride that has allowed Kids Like Brett to endure; a pride that is both apparent when detailing how John Howard came to be his patron, and meeting countless young children whose life has been directly impacted by Steven.
And while this is perhaps hidden by a touch of embarrassment when awards such as Father of The Year, North Sydney Older Person of the Year and Australian of the Year – Local Hero are mentioned, it’s clear that the real reward for Steven is seeing his son and so many children since, able to survive and flourish.
“When you can do something like that, you just feel good.”
To donate or learn more, visit https://www.kidslikebrett.org.au/ or contact Steven at steve@kidslikebrett.org.au.
By Amelia McNamara