Donation Stories

New beginnings

Ruby Payne was just eight years old, and lying on the lounge with her father Robbie when he noticed that her heart was beating unusually quickly. The next morning, when he checked again, it was still frighteningly fast. After talking with her mother Mel, they whisked Ruby straight off to their local GP.

Soon afterwards, a cardiologist diagnosed Pulmonary Arterial Hypertension, a rare condition that causes high blood pressure in the arteries of the lungs. 

A team of medical experts at Westmead Children's Hospital tried to slow down the condition with a battery of tests and medications. 

But despite their best efforts, Ruby's heart, lungs and liver began to fail, causing her to become weaker and weaker. At one point Ruby struggled to walk more than 30 metres without needing to rest. The only option became patently clear: Ruby needed a double lung transplant. Fast.

Thankfully, due to an organ donation, a match was found within weeks and Ruby began a long but steadfast road to recovery. 

Today, Ruby is in Year 7 at High School, can walk five to six kilometres a day and is looking forward to playing netball again. 

"Words can't explain how grateful we are to our donor and donor's family for this incredible second chance,” said Robbie. “They gave this precious gift to our daughter at a time of incredible pain and grief.”

Ruby has been "incredibly brave and strong" throughout it all, Robbie said. “That beautiful smile of hers, that’s what kept us all going".

Unintentional hero

“I miss everything about Tony, even the annoying things. If there was just a half drunk coffee cup in our shed I promise I wouldn't be annoyed. I would be so happy.” 

These are the words of Brenda Pratt, who lost her childhood sweetheart and beloved husband in October 2021 after suffering a stroke.

“I miss his laugh, his cheeky smile. I miss how much he loved us all. I miss his ability to be able to do anything it seemed, and now I have to do those things on my own. I am grateful that a 17-year-old boy loved me until he was 53 years old, for his confidence to say yes to everything.”

Amidst the waves of grief has been the consolation that Tony was an organ donor.

Tony Pratt was a born leader who had forged deep connection with all his family and friends. To give in death is exactly what almost anyone who knew him would expect.

“Tony had a giving nature, so it was his last act of giving,” she said.

Brenda, as well as their daughter Ebony and son Hayden have derived comfort from the thought that people would be seeing because of his corneal donation and that other people’s lives have changed for the better including a lung recipient.

“I like the thought of looking into a random person’s eyes knowing part of Tony might live on in them,’ Brenda said.

After serving in the RAAF for more than two decades working on fighter jets, Tony ran a cattle and crop farm with Brenda in Kyogle, in far north east of NSW. He also delivered mail, earning the nickname Postman Pratt, and was renowned for helping many people along the way, whether it be changing the tyre of a stranded motorist or helping a cow give birth.

Tony was an avid football player and coach, loved fixing things and most of all loved playing with his grandchildren Harper and Nate particularly their favourite game of “chaseys”

When Tony’s family were asked about donation, they did not hesitate.

“We knew it meant that someone had to be having a better day than us somewhere, getting the miracle that we didn't,” said Brenda. “We know that he would have loved that.” 
 

First kidney transplant between HIV positive donor and recipient marks a milestone for HIV patients

When one lucky transplant recipient, let’s call him Ken, was diagnosed with HIV in 2006 he thought he would die from the disease.

Fast forward 17 years and Ken is not only alive – he is better than ever thanks to a recent kidney transplant from an HIV positive donor.

In an Australian first, staff at Sydney’s Royal Prince Alfred Hospital performed a kidney transplant between a donor and Ken who were both HIV positive.

The RPA Kidney Transplant team performed the operation on the patient who received the kidney transplant on an unintentionally fitting date –World AIDS Day.

Ken had been on dialysis for renal failure for several years. With a wait list for kidneys averaging at about six years, his life was becoming increasingly grim.

“Being on dialysis is like travelling through the desert,” he said. “The scenery doesn’t change and you don’t know how long your going to have to keep travelling along that straight line.”

Facing an unknown length of time on dialysis, Ken felt himself sliding into despair. 

“After a while it became too painful to go on,” he said. “I seriously considered letting renal failure claim my body and checking into palliative care instead.”

The day he received the call that a kidney from an HIV positive donor was available was an unforgettable one. 

“It was the day my life suddenly began to have a sense of hope.”

The transplant went extremely well and Ken is enjoying every moment of his “new life” as he calls it. “I can’t thank the medical experts around me enough for giving me such a great second shot at life. All I can say is I feel blessed by what’s happened to me.”

“This is wonderful news for the HIV positive community,” says Dr Michael O’Leary, the co-State Medical Director of the NSW Organ and Tissue Donation Service.

“HIV does not preclude you from being placed on the organ transplant waiting list – although some modifications of HIV medicines may be required, the results are the same as for non-HIV patients,” he said.

“This also means that people living with HIV and organ failure can safely receive an organ from a HIV positive donor.”

“Everyone is eligible to register as an organ and/or tissue donor on the Australia Organ and Donor Registry regardless of their HIV status,” Ms Danielle Fisher, General Manager of the NSW Organ and Tissue Donation Service said.

A person’s sexual orientation, gender, gender identity or expression does not prevent that person from becoming an organ or tissue donor.

A man who has had sex with a man can register to be a donor. 

Everyone wishing to donate organs and tissues will be considered - organ donation is not the same as blood donation, as it is always matched to a specific patient.

Tissue donation is similar to blood donation. It is regulated by the TGA and subject to additional requirements. This is because tissue products are prepared for the general population and stored rather than being matched to one recipient in the same way that organs are.  

All potential organ and tissue donations are valued and considered, including those from LGBTIQ+ people.

New treatments for historically life- limiting diseases such as Hepatitis C and HIV are increasing the opportunities to consider organ donation. Potential donors are assessed on a case-by-case basis for risk factors to ensure transplant patient safety.

“This means more and more people can donate their organs and HIV positive organs can help improve or save lives,” Ms Fisher said.

“The more organs we have for transplant the more lives will be saved.”

For every organ donation, the overall health or condition of organs, as well as compatibility with potential recipients can vary and is considered case by case.

But in general, a typical kidney from someone with HIV positive status can have excellent function in an HIV positive recipient who has kidney failure, Dr O’Leary said.

Ken says organ transplants such as his “roll back years of stigma”.

Being able to receive an organ from an HIV positive donor can enable a shorter wait for a transplant. 

As Ken puts it: “It gives our community a sense of hope. We can now go into a hospital when we are HIV positive. It gives you a lot to live for. You can become a donor. You can change lives. All is not lost. Registering to donate is a great way to help our community.”

For more information on organ donation and the LGBTIQ+ community, see our LGBTIQ+ Donation page. You can register as an organ and tissue donor on the Australian Organ Donor Register.

 

A path with heart

Emily Smith will never know of the stranger who saved her life.

But as she holds her little son Hudson in her arms, she remains forever grateful for their gift.

“My son still has his mum because of the kindness of a stranger,” she says.

Six weeks after giving birth to Hudson, the 26 year old’s world came crashing around her when she discovered she needed a new heart – and fast.

She was struggling to walk from the living room to her bedroom without being out of breath. At times she would gasp for air, she lost her appetite and there were multiple occasions where she thought she was going to faint.

Tests showed that she had peripartum cardiomyopathy – a form of heart failure that happens up to five months after giving birth.

Placed on the emergency transplant list, Emily was added to both the Australia and New Zealand directories.

Luck was on her side, and after just a week and a half, she received a perfect heart match.

Her old heart was successfully removed and the new one took its place.

Two weeks later, Emily walked out of hospital, elated to be given a second chance at life.

Emily is now a committed advocate of organ donation.

“I don’t really think of it as someone else’s heart,” she says. “It is my heart but it just took a different journey to becoming my heart. Words cannot express the gratitude I feel to the unintentional hero who saved my life, and kept my family together”.

 

Tom's gift

A Year 12 student with a big future in academic studies, sport and music, 17 year old Tom van Dijk tragically suffered a fatal cardiac arrest following a swim with his family near their home on Sydney’s northern beaches.

But Tom’s story doesn’t end there. Tom and his generous family gifted his kidneys and corneas to improve the lives of others. Tom’s kidneys were successfully transplanted into one man and one woman. His corneas also went on to restore sight to seven people.

For Tom’s girlfriend Caitlin, his death was the end to many plans and dreams but his generous and compassionate spirit lives on.

The pair had met on the school bus at the end of 2019. Romance blossomed, and they quickly became inseparable.

After they’d finished school, Tom and Caitlin were planning to travel around Australia in a campervan before buckling down to study at university.

“Tom was so generous, so compassionate, so funny, and so engaged in life. We just got on so well together,” said Caitlin, who has continued to be warmly embraced by Tom’s family.

“Tom was one of those incredibly special people. He brought so much joy and love into my life. I just feel so lucky to have met him.”

It was when Tom was getting his learner’s permit that he asked about organ donation at the dinner table.

“Tom made it clear that he wanted to support organ donation and it was so typical of him to want to help others in need,” said his father Brad. “In hindsight, we are so grateful that we had the discussion as a family.”

Brad and Tom’s mother Karrie did not hesitate following their son’s wishes after he passed away. “It’s what Tom would have wanted; to be able to help others,” said Brad.

Caitlin was not surprised when she discovered her beloved was an organ donor.

“All Tom wanted to do was help people, and in his final moments that's exactly what he did. I never knew one person could care so much about the people he loved, and even people he hadn't nor would ever meet.”

Last year, Tom’s parents wrote a letter to each of the recipients, hoping they were happier and healthier than ever.

“While losing him was so shocking, and we still feel the pain, he was a blessing to us and we are so incredibly thankful for the privilege of having him in our lives, and knowing he lives through you.”

 

Birth of the new

Sydney environmental lawyer Sarah Mansfield was dismayed to discover she had vasa previa whilst pregnant with her daughter Lara several months ago.

Not only did the condition potentially put both mother and baby in danger, but it also put an end to her plan of having a natural birth as she did for her first child, Max, who is now a boisterous 29-month-old.

But thankfully, Sarah found herself in the care of what she calls her “dream team” of doctors and specialists at The Royal Hospital for Women Randwick.
Under the careful watch of the hospital’s director of obstetrics, Dr Andrew Bisits, and Fellow Dr Sara Ooi, it was arranged for Sarah to have a caesarean section.

The birth went extremely well and donating her amnion membrane, or thin layer of tissue from the placenta, she said was the “silver lining.”

“The care I received at The Royal was exceptional, so when I was asked by Dr Ooi if I was interested in donating, I jumped at the opportunity.

“All I had to do was fill out a form and it meant the amnion didn’t go to waste. It was easier than donating blood. I love the thought of it being able to help someone, whether they are conducting research or otherwise need a skin graft.

Sarah’s amnion is just one of the many that have been donated to the NSW Tissue Bank.

Since late 2018, women giving birth via elective caesarean at the Mater and The Royal Hospital for Women have been able to donate their placenta tissue, also known as the amniotic membrane, to be used as a surgical dressing for patients at Sydney Eye Hospital.

Sarah’s was the first from the Royal Hospital for Women. Thanks to the fact that one donation can generate 30 grafts, the NSW Tissue Bank will soon hit a milestone of 1000 amnion recipients.

Amnion donations are used to heal corneal ulcers, chemical burns, eye diseases and other wounds.

Dr Con Petsoglou, medical director of the NSW Tissue Bank and a surgeon at Sydney Eye Hospital, who has been coordinating the program, said the “bio bandage” worked because it is a foetal tissue, full of healthy molecules that help healing.

The method dates back to at least the 1960s, when it was uncovered by US eye surgeons entering Cuba who learned that local doctors had been dressing wounds with a mysterious substance purchased from Russia. Tests revealed the material was placenta tissue.

For the past eight years, Australian hospitals have been purchasing tissue donated through hospitals in Auckland. But now between 15 and 20 Sydney women like Sarah choose to donate their placenta each year.

 

Second chances for a gentle giant

Thanks to an organ donor, a father of two little girls has been given a new lease on life by a kidney transplant.

Throughout his adult life, Chris Enahoro has been plagued by kidney disease.

The 40 year old former Souths centre, partner of Megan and father of two girls Thea and Matilda was diagnosed shortly before his 18th birthday.

For more than two decades, Chris, known to many as Maroubra’s gentle giant, battled with nausea, fatigue, insomnia, gout, weight gain and loss of appetite. Due to the medication he also developed shingles, pneumonia, high blood pressure, fluid retention. At one point Chris’s strapping 195 cm frame ballooned in weight and he put on 35 kilograms.

In 2022 things started looking hopeful: he started dialysis after his sister Elizabeth offered to donate her kidney. But then his world came crashing down around him again when a few weeks before the operation, he was told his sister’s kidney was not suitable for the transplant.

While tackling these health challenges, and spending months in and out of hospital, he continued to maintain his career as a rugby league player in NSW and Queensland, and more recently, as a personal trainer.

Finally in May 2023, Chris received the call he’d been waiting for - a large kidney from a deceased donor in Perth was available for transplant.

Chris says he is now more energetic than he has been in years and is deeply grateful to the NSW Organ and Tissue Donation Service.

“The day after the surgery I could see better and smell better. It felt like a fog had been lifted,” he says.

Chris encourages anyone who will listen to register for organ donation.

“The biggest thing I’ve noticed is my relationship with my friends, family and my kids. They haven’t known me healthy. They’ve known me most of my life being unwell and sleeping most of the time. Now I can go to the kids’ sports and coach their teams. It’s been amazing.”

Chris is also keen to get back out into the surf at Maroubra, relishing the dawn ritual of watching the sun rise over the Pacific ocean, savouring every moment of what he calls “his new life.”