A CENTRAL Coast girl has been chosen as the poster girl for Bandaged Bear Day next month, the major fundraiser for the Children's Hospital at Westmead.
At 18 months old, Zali, of Kincumber, was diagnosed with langerhans cell histiocytosis - a severe disorder of the immune system treated with chemotherapy.
Children with this disorder in the first two years of life have only a 20 per cent survival rate.
There was no choice but to introduce a new type of intensive treatment which required Zali to have two types of chemotherapy, once a day, for five days - enough to make any healthy adult feel unwell.
Exactly 24 hours after the new treatment began Zali was rushed to the Paediatric Intensive Care Unit (PICU), where she would spend the next four months. She was intubated and ventilated to help her breathe, and suffered major organ failure eight times. The list of side effects grew, as did the amount of catheters, tubes and medications.
Zali then endured calcification in her heart, lungs, and other parts of her body, a rare complication of extreme illness that caused her entire body to weaken. With chemotherapy still vital, a number of different specialist teams worked on Zali as she grew weak. The chemotherapy was having a delayed effect, Zali just needed to live long enough to experience it.
Her family had not yet lost hope when they were offered a first-of-its-kind option. It was a medication called Pamidronate, more typically used for children with osteoporosis.
Zali was given the medication which helped her organs to recover.
One hundred and five days after her first admission to PICU, Zali was back in a normal ward, eating four Icypoles a day, blowing bubbles, and enjoying hugs with her family.
Chemotherapy continued and soon became the reason Zali was able to celebrate her second birthday with a completely inactive condition.
“They say it takes a village to raise a child – it took 15 groups of experts to save Zali’s life," Zali's mother, Lisa, said.
"She only had a small percentage of survival, and in PICU it was even smaller. Without their extraordinary skills we would have had a funeral for our child by now."
Against all odds Zali is now in complete remission. She is no longer an inpatient, but she still visits the hospital regularly for check-ups once a fortnight, and physiotherapy and occupational therapy four times a week. They will continue to do this for the next six months.
“The Hospital gives unconditionally. The doctors and nurses have worked on Zali as if she was one of their own," Lisa said. "They have revived her several times, they have cried with us, and ultimately made her well enough to be the centre of our family again. I hope donations to the hospital are as generous as they have been to us.”
The Children’s Hospital at Westmead is the largest paediatric centre in NSW, providing excellent care for children from NSW, Australia and across the Pacific Rim.
For more information visit www.chw.edu.au
Bandaged Bear Day is the major merchandise fundraising Appeal for The Children’s Hospital at Westmead.
The appeal runs throughout the month of March. People can show their support by donating to the appeal or purchasing Bandaged Bear merchandise from participating retail outlets.
On March 26 hundreds of volunteers will be selling merchandise at train stations, shopping centres and major business districts.
To celebrate the 21st anniversary of the Bandaged Bear Day Appeal, organisers are incorporating a theme to drive merchandise sales and encourage community involvement.
The theme is 'When I Grow Up I Want To Be…' - encouraging people to reflect on their childhood dreams, to help ensure that children who are struggling with illness have a fighting chance to fulfil their own dreams.
Organisers are encouraging people across NSW to hold their own 'When I Grow Up' themed party throughout the month of March. The idea is to invite their friends to dress up and donate to The Children's Hospital at Westmead.
To do this, people can register online and receive a starter pack. Go to www.bandagedbearday.com.au or phone 9845 3364.
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