Jasbinder Sanghera and her husband Abdullah were left devastated after losing their son Ameen to cardiomyopathy – a disease of the heart muscle – in 2005. He was just 16 months old.
Ameen's heart showed signs of failure and it was too late for him to receive an organ donation that could save his life.
Four years later, the Brisbane couple had another son, Jibreel. But when he was three years old, they were told he had VCLAD deficiency, a rare condition that prevents the body from properly breaking down certain fats and can affect the heart.
"It was very much like déjà vu," Ms Sanghera told SBS News.
"Not only the timing of the [same] day that they went into hospital but the way it progressed and how acutely they fell critically ill... lightning struck twice."
Jibreel was immediately flown to Melbourne and put on a heart support system while the family waited for a suitable donor. He needed a new heart to save his life.
Jibreel was flown to Melbourne for emergency medical treatment. Source: Supplied
After a successful transplant at the end of 2012, Jibreel underwent several more surgeries - including four operations in seven days.
'Every time, I thanked God'
Ms Sanghera, a practising Muslim who also has two other children, said her faith helped her through the ordeal.
"It really can cripple you, that worry and anxiety and stress... I think the sense of peace that it [her faith] gave me was the only way I was able to move on and do my job," she said.
"When he was wheeled back into that room every time, I thanked God he had come back."
Five years on, Jibreel is fighting fit and Ms Sanghera is using his story as inspiration to speak publicly for the first time, ahead of DonateLife Thank You Day on Sunday 19 November 2017.
Ms Sanghera says her faith helped her get through the ordeal. Source: Supplied
It is a national day dedicated to honouring all organ and tissue donors and their families.
Ms Sanghera said her knowledge of organ transplantation, particularly in relation to her faith, was limited during Jibreel’s ordeal, so she prayed for guidance to make the right decision.
Research shows she’s not alone. A study by the Organ and Tissue Authority in 2014 found that 40 per cent of Australians didn’t know if their religion supported organ and tissue donation, and 20 per cent of families that declined donation in 2014 did so over religious or cultural concerns.
According to DonateLife, an Australian Government-funded agency; Islam, Christianity, Buddhism, Hinduism and Judaism all support organ and tissue donation.
One organ and tissue donor can transform the lives of more than ten people.
'Conversations need to be had'
Ms Sanghera was asked to tell her story to the Islamic Women's Association of Australia. She also hopes it can lead to discussions about organ donation amongst community leaders at the top.
"I think these conversations do need to be had, even within the faculty of the Imams… where they are in a position where they are doing sermons and talking to the community," she said.
"These are issues that are very relevant nowadays and I think they need to revive these types of topics and address it correctly."
In a message of support provided to DonateLife, Australia’s Grand Mufti Ibrahim Abu Mohammed said: “The Muslim faith in Australia places saving a life very highly.
"It accepts organ donation during life provided it does not harm the donor and sought absolute permission, and after death in order to save a life. It is seen as an act of merit and in certain circumstances may be an obligation.”
Chair of the Australian Organ and Tissue Donation and Transplantation Board, Dr Mal Washer, said in a statement: “This Sunday is DonateLife Thank You Day, a time to say 'thanks' to all donors and their families whose generous act saved the lives of many.”
The Sanghera family after Jibreel (front, centre) made a full recovery. Source: Supplied
He encouraged people to discuss their willingness to donate with their families and join the Australian Organ Donor Register:
"The fact is the majority of Australians would be willing to receive a life-saving transplant to save their life or that of a loved one. Then surely we must be prepared to ourselves become a donor at the end of our life.”
Ms Sanghera hopes her family's story can also encourage people to help others.
"We all know deep down it can happen to anyone," she said.
"We are all human beings, nobody’s blood is a different colour. We are all exactly the same creation.
"We have to imagine it's us… put ourselves in the driver's seat and say what are we going to do about it?"
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