FROM DEATH TO HOPE

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How a Sydney-based family is raising awareness about organ donation in memory of their seven-year old son who gave new lives to four individuals in his death.

When your seven-year old comes home from school and suddenly asks you if you have registered to become an organ donor in the eventuality of death, you brush aside the topic thinking he is too young to even know anything about organ donation, reflects Rupesh Udani.

But Rupesh proved himself wrong. It was 2015. His children Deyaan and Naisha, who were then 7 and 9 years of age respectively, were well informed thanks to their fortnightly spiritual classes at the Shrimad Rajchandra Mission Dharampur (SRMD) in Sydney. They told him, “When you are dead, why not help other people. This is the best gift you can give, dad.”

Both his children told him that if something happened to them they will be the first to donate. Although the conversation pushed him into a state of quietude for a moment, Rupesh replied he loved his organs too much to donate and didn’t want to talk about this topic.

That same year in December, Rupesh and his family went on a holiday to Mumbai and were due to return soon. Deyaan, who had been feeling unwell for a week, had to be taken to hospital on the day they were flying back to Sydney on January 19, 2016. Doctors initially suspected it to be a case of dengue, recalls Rupesh, but after complaint of his headaches an MRI test confirmed a blood clot and a haemorrhage. Deyaan was diagnosed with severe cerebral sinus venous thrombosis. What ensued was an operation lasting 16 to 18 hours, but despite best efforts by doctors Deyaan could not be saved.

Deyaan’s illness completely baffled Rupesh and his wife Mili. “He never had a fall or got hit and he was one of the healthiest boys. He passed away at the age of 7 years, 3 months,” says Rupesh.

It was then that the Udanis decided to fulfil Deyaan’s wish. When he was declared brain dead, they approached the doctors for Deyaan’s organs to be donated. “At that point of time, the doctors were very surprised. Then we had to explain that it was his wish. They offered counselling and we refused because we were aware. At that point of time it became big news,” says Rupesh.

Deyaan’s heart was received by a seven-year old girl suffering from end-stage organ failure. His kidneys were donated to an 11-year-old and a 15-year-old, while his liver went to a 31-year-old man.

Back in Sydney, the Udanis wanted to honour Deyaan’s life and memory. Initially they began with talking about the importance of organ donation whenever there was an opportunity in private and public forums and, at the same time, campaigning for organ and tissue donation in New South Wales.

However, last year Rupesh and Mili started Saffron Day to work towards a cause that their young child had firmly believed in. Saffron Day is an initiative of SRMD, which is a community partner of Donate Life, the Organ and Tissue Authority (OTA) working with states and territories, clinicians, the community sector and the general public to deliver the Australian Government’s national program to improve organ and tissue donation and transplantation outcomes in Australia.

Saffron Day was launched last year on November 18 and marked a new high in the campaign by the Udanis. This year Saffron Day was held on October 22.

Saffron Day is a day that raises awareness about organ donation and urges all Australians to register for organ donation, discuss with family about one’s intentions to donate a gift of life and keep one’s dreams and legacy to live on. It asks for three simple steps: register your decision to save lives as an organ & tissue donor at saffronday.org, wear something orange and/or use the merchandise provided, take a photo and post on social media with the hashtags #SaffronDay #doitforDeyaan, and encourage family and friends to do the same.

Last year, Saffron Day was carried out in the states of New South Wales, Tasmania, Queensland, Western Australia and South Australia and the response was very good, says Rupesh. “People celebrated Saffron Day in the workplace, they appreciated the initiative and we got good feedback.”

This year, the organisation went a step ahead and its volunteers went around Australia to speak at public forums and educate people to create a lot of awareness and posting very frequently on its social media spaces.

“There is no requirement to raise funds. Simply display a piece of saffron on your clothing and begin conversation with your friends and family about organ donation,” says Rupesh, adding, “Saffron Day is a unique structure,” explains Rupesh. “It is very separate from what we do at Shrimad Rajchandra Mission Dharampur. We kept it neutral, secular and we focus only on organ donation. This cause is very dear to us.”

The colour saffron has a special importance to the Udani family. “We started Saffron Day in Deyaan’s memory. His favourite colour was orange. When we had a look at his last few photos, he was wearing orange-coloured clothes. And when you look at the meaning of saffron, it is expensive and rare, when you add saffron into a bucket of water it will turn into orange akin to spreading love. Saffron stands for courage and sacrifice. That’s why we have chosen that name,” says Rupesh.

Saffron Day has attracted a lot of participation from people of all walks of life such as Ernest Lawrence, an Aboriginal from Darwin who is supporting this cause. On his part, Rupesh is working closely with the community there to spread the awareness on organ donation. “We want to make sure that all the communities are aware of this noble cause. You don’t realise but you hear so many times of people waiting for a transplant and going through so much grief… I go to so many functions, some people don’t take it seriously, some do and some who don’t take seriously at least take the brochure and listen to my story. I was once very sceptical myself.”

Interestingly, statistics say we are more likely to be in the receiving side than the giving side. What that means is, there are only one or two per cent chance of us being able to donate because death has to be in the ICU of the hospital.

So there are rules for donation that many are unaware of. For instance, if one dies outside the hospital one can only donate the eyes, or if one dies of a heart attack the cornea has to be retrieved within certain hours, says Rupesh, adding, “I don’t know the exact timeframe but the value organs such as the heart, liver, kidneys shut down and they have to be retrieved soon.

“The important lesson is you need to talk to your family first. When you are in ICU you can’t take any decision and it is a very tough decision for family members when someone is in ICU. That way you do no not lose out on the potential to save other lives,” says Rupesh.

In Australia at any given time, there are around 1400 people waitlisted for a transplant. A further 11,000 are on dialysis, many of whom would benefit from a kidney transplant, according to Donate Life.

For Rupesh, his current involvement is like a peace mission and he believes one of the highest forms of donations is organ donation. Although Saffron Day is the highlight event of the year, he and his team of active volunteers work through the whole year. “We don’t take any donation, all we ask is for people to register in any organ donation registry such as saffronday.org or donatelife.gov.au. Except in South Australia where you can do only through your driver’s licence, in all other states you require your Medicare and you can do it in less than 30 seconds.”

In his short span of life, Deyaan left his mark and led by example. An incident that comes to Rupesh’s memory is a school sports carnival when Deyaan lost the racing competition to help a fellow competitor who had fallen on the ground, both ran together to finish last. He was five-years old then but he told his father, ‘it is not always about winning’. Rupesh can still see the smile on his little boy’s face who carried such wisdom and who left smiles on the faces of others even in his passing.

By Indira Laisram