Through the Steve Waugh Foundation, which supports children with rare diseases, Zara Hilary Boshammer will leave an invaluable contribution.
The Royal Flying Doctor Service will also benefit, and so will countless patients at the Miles Hospital.
And for Zara’s parents, Kate and Justin Boshammer of Condamine, her legacy will be profound and lifelong.
“Zara helped open our eyes to the world of disability, and showed us so much beyond what was previously our experience of life,” Kate Boshammer said.
“She was the sweetest, most patient and resilient little girl, who endured so much, and without complaint.”
Zara was born in April 2020 with a number of complications, and in August was diagnosed with Pallister Killian Syndrome (PKS). PKS is an extremely rare and severe chromosomal condition that made every one of her 213 days a huge challenge.
Her treatment required countless medical and therapy appointments in Brisbane, as well as Dalby and Toowoomba. Zara spent three of her first six months either in hospital or attending appointments, her main admission being almost six weeks in Brisbane for respiratory complications.
Kate said there were only 20 children in Australia who suffered from PKS, and about 500 worldwide. It has no known cause nor cure.
“It is a life-long and life-limiting condition, and affects these children from head to toe,” she said.
“I remember the gut-wrenching, heartbreaking moments of hearing the sombre words as our geneticist explained that PKS meant severe to profound intellectual disability, and a long list of medical complications.
“The life expectancy was varied. Zara may never walk or talk, or even eat by herself. Justin and I are beyond grateful to say that we had reached the point where we had come to terms with that, and loved and accepted little Zara for exactly who she was.”
Zara tragically passed away on November 2 aged almost seven months. She was especially adored by her older brother, Theo, and her grandmother, Elizabeth.
Despite the family’s grief, Kate and Justin wanted to create a positive impact from Zara’s life, and so came up with a vision — “Zara’s Day”.
The community rallied. Live and silent auctions of donated gifts, a raffle, as well as a GoFundMe page, have generated a remarkable $148,000. Funds will also be donated to the Miles Hospital to purchase high flow oxygen facilities.
“High flow oxygen is something the Miles Hospital really needs. Zara required it both times she was admitted before being flown to Brisbane, and their head of nursing said it would be used at least fortnightly. It’s something that will benefit the whole community,” Kate said.
Reflecting on their journey with Zara, Justin Boshammer said the challenges of her condition was like suddenly hitting a “brick wall” in their lives.
But he said the experience of caring for their beloved daughter, and her passing, had taught them a great deal of “positive lessons”.
“After a while the positive lessons became clearer, lessons that are unique to our journey, but ones that have moulded us into hopefully better people and given us an overwhelming feeling of gratitude and a greater level of empathy,” Justin said.
GOFUNDME DONATIONS WILL BE CLOSING SOON. CLICK HERE TO DONATE.
Kate and Justin would like to thank Emily Beutel Weddings & Events in Miles and Lauren Butler of The Baking Asylum in Condamine for assistance with the event, as well as Wattle & Twine, which generated $10,070 from an Instagram auction.