The amazing legacy of organ donation ambassador Jessica Sparks

Even after Jessica Sparks passed away late last month, mother Kate Sparks will continue to make a difference, pledging to continue her daughter’s advocacy for organ and tissue donations.

Australia lags behind 16 other countries in organ donation rates, with 80% of Australians saying they would donate their organs, but only 36% being registered as donors.

“Jess’s mind was ready, but her body wanted to continue the work it couldn’t do.

“Throughout that journey, she was completely passionate about raising awareness about organ and tissue donation. I did everything I could to respect the gift, the donor family, and the person.

At seven weeks old, Jess was diagnosed with Cystic Fibrosis. Cystic fibrosis is a chronic, life-limiting genetic disease that primarily affects the lungs.

That meant regular “tune-ups” at Sydney Children’s Hospital for the Wollongong girl, but Sparks was adamant that her daughter wasn’t defined by her health. .

“She didn’t want to be the ‘cystic fibrosis girl,'” Sparks said. She never let that get in the way of the hopes she had and her dreams.

Jess was an honor student at her high school, St. Mary’s Star of the Sea, from grades 7 to 11 each year. However, in 2009, while her peers were completing her HSC, her health began to deteriorate and she was diagnosed with terminal lung disease. .

She was put on a waiting list for an organ transplant.

When the first phone call came, mother and daughter felt uncomfortable. Jess is taken by ambulance to St. Vincent’s Hospital, only to arrive at news that her organs are unsuitable for transport.

Just a day later, I received a second call. This time, the operation proceeded for 9 hours and was a success.

“When she woke up and took her first breath after surgery, I was in the ICU with her. I looked up,’ said Ms. Sparks. “It was amazing.”

The transplant gave Jess another seven years, during which she earned two degrees in law and journalism, and a diploma in French. She fulfilled her dream of traveling to Paris, working as her adviser to the media and participating in the political campaigns of Labor MPs, including former MP Cunningham Sharon Byrd.

“Jess had an impressive spirit and amazing dedication and energy to all the causes she campaigned for,” Byrd said.

“She cared about people and had strong values. Her legacy is truly amazing.”

In her twenties, Jess founded SparkingLife, a nonprofit organization dedicated to increasing participation in organ donation, and was awarded a prestigious Churchill Trust Fellowship to study barriers to organ donation.

Every day she lived with the knowledge that her body could reject a donated organ, but in 2016, that fear became a reality.

This time he was contacted immediately and Jess underwent a second double lung transplant later that year. However, according to her mother, her surgery was fraught with complications and she showed early signs of rejection.

In August 2019, three years after her second double lung transplant and more than a decade after her first, her suffering was revealed in a social media post.

“This second time was hard. Many complications and many setbacks brought me back to less than 20% lung function in less than 6 months with these new lungs. and ever since,” she wrote.

“With this level of functioning and health, there is not much I can do.I struggle every day.If I walk 10m or talk too much,I am out of breath. You have given me this opportunity to go on and hope goes on…and there is no greater gift than that.

Early in the year, Jess’ health began to deteriorate rapidly and she died in late September. There’s a floor-to-ceiling decal at the entrance to Sparks’ house that Jess and her mother chose and put together. It is written.

Register as an organ donor www.donatelife.gov.au/register-donor-today

Few give the gift of life

It’s time to “reset the conversation” on organ donation. Advocates are calling for a return to a system that allows all Australians to register their decisions on their driver’s licenses.

South Australia is the only state where individuals can register as organ donors under a licence, with the highest rate of consent to donation at 73%, well above NSW’s 51%.

Transplant Australia CEO Chris Thomas said last year’s organ donation and transplant rates fell for the first time in a decade, calling for a “whole community and healthcare response.”

Last year, 1,174 Australians received an organ transplant. This is a 7% drop from 2020, and a significant drop from 2019, when she had a record 1,683 transplants.

Also, the number of deceased organ donors last year decreased by 9% from 463 in 2020 to 421.

This corresponds to declining consent rates for organ donation nationwide. Last year, 56% of her family members approached for organ donation said yes, compared to 58% of him in 2020.

“We have continued to support Australia’s current donation ‘opt-in’ system, recognizing that giving is the greatest gift you can leave to someone else,” said Thomas. I was.

“However, we are concerned that we have not presented the public with an easy and effective way to support donations, and have reintroduced the opportunity for all governments to register as a donor with their driver’s license. We encourage you to do so.

“It was a mistake to remove this option 10 years ago. What is clear from South Australia’s statistics is that high registration rates can lead to high family consent rates.”

Organ and Tissue Authority CEO Lucinda Barry said the pandemic had a “significant impact” on donation and transplant rates, and although rates “increased slightly” in 2022, Covid continues to pose challenges. said there is.

Barry said a new five-year strategy announced this year aims to increase the number of transplants to 2,000 annually by 2027, requiring 680 deceased organ donors.

This aimed to ensure that 50% of eligible Australians were enrolled in the Australian Organ Donation Registry and 90% of them had discussed their wishes with their families.

Australia lags behind 16 other countries in donation rates. Barry said Australia will monitor the success of the UK, which has just introduced an ‘opt-out’ consent system.

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