The federal government's pledge of $65 million towards the first dedicated Cystic Fibrosis Unit at Westmead Hospital in Sydney comes at a tragic cost.
Sydney doctor Malay Rana was born with Cystic Fibrosis - a genetic condition affecting both the respiratory and digestive system.
However, he did not let the condition deter him from his ambitions and his dreams.
"Never in his life did he use his illness as an excuse," his mother, Meenal Rana, told SBS Gujarati.
He was a keen sportsman, participating in the Sydney City to Surf competition. He excelled academically, being awarded the NSW Premier's award for all-round excellence in the HSC, and despite spending long hours every day in physiotherapy and other treatments, he graduated in medicine with honours, specialising in pathology.
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"Malay published 8 articles in international medical and scientific journals such as Nature, American Journal of Clinical Pathology to name a few. Till date, his articles have been studied over 4500 times and cited close to 65 times by scientists and medical specialists worldwide." Malay's father, Divyesh Rana added.
Cystic Fibrosis is the most common lethal genetic disorder in Australia, affecting 1 in 2,500-2,800 births, but over the last few decades, the lifespan of patients has increased from 15 years in the 1970s to 40 years in 2010.
On average a person with Cystic Fibrosis needs to be admitted to hospital once a year. Due to his dedication towards keeping fit and healthy Malay was admitted to the hospital only four times in his life. On April 28, 2015, he died aged 27, two days after being admitted to the Westmead Hospital for a suspected small bowel obstruction.
His death sparked questions about the treatment given to him by staff at the hospital.
'What Malay achieved in his personal and professional life is remarkable and inspiring.' (Coroner's report, June 2018)
The coroner's investigation found "failures in his care and treatment at Westmead hospital. Malay specifically attended Westmead hospital as it is a hospital that specialises in treating cystic fibrosis patients. That makes Malay’s death even more tragic."
The investigation found that the hospital had only four dedicated cystic fibrosis beds at the hospital and while it acknowleged changes made in the wake of his death, it recommended the establishment of a specialist ward.
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"It was his dream to have a Cystic Fibrosis ward at Westmead Hospital as it is one of the major teaching hospitals in Sydney," Meenal Rana said.
Govt announces $65 million
On April 20, 2019, Prime Minister Scott Morrison together with Health Minister, Greg Hunt, met with Malay's parents, and in their presence announced the allocation of $65 million for a specialist Cystic Fibrosis Unit at Westmead Hospital.
Scott Morrison spoke of Dr Malay's efforts for the Cystic Fibrosis community, saying: "In honour of the memory of Dr Rana, who passed away four years ago, we are establishing Australia's first dedicated Cystic Fibrosis Specialist Unit at Westmead Hospital with a $65 million of investment".
Cystic Fibrosis is the most common chronic, life-limiting genetic condition affecting young Australians today. Every four days a baby is born with the disease.
The Unit will have 16 single rooms plus four isolation rooms with day stay rooms for procedures. Specialist doctors and nurses will be appointed to assist the patients.
“REACH” program
In order to address the patient's and their family's concern about treatment, relatives and companions of the patient could use the to request senior staff member's attention or report unsatisfactory responses provided by nurses and doctors attending the patient.
After getting the breakthrough after their long campaigning, his parents believe that it was their son who constantly guided them in this cause.
"In spite of facing many hurdles during the process, it was Malay's inspiration that supported us mentally and emotionally throughout this time,” they told SBS Gujarati.
Also Listen - audio in Gujarati
Gujarati family behind first ever Cystic Fibrosis unit in Australia
