“You can’t take it with you,” said Ant, his voice steady but full of emotion.
When Elanora Heights residents Edwina and Ant Symonds lost their baby boy, Sebastian ‘Sebby’, after a seizure at just ten months old, their world turned upside down. But in the midst of their deepest grief, they made a choice to save another person’s life.
Sebastian Symonds was a joyful, curious baby who brought boundless love to his parents.
“His smile was super special, because he did not really smile at everyone. So when he did smile, it was really awesome,” Edwina said.
At eight months, Sebby began suffering seizures. One night, a prolonged episode caused irreversible brain damage and he was pronounced dead in July 2018 at ten months old.
“When they told us that Seb had died, it was the worst moment of our lives,” Edwina said.
“When you go to the hospital with a baby, you are there for your baby to be fixed and you are there to leave the hospital with your baby. It was just horrendous.”
At the time, Edwina was 17 weeks pregnant. After Sebby’s death, Ant asked doctors to reveal the sex of their unborn child so they could tell Sebby he was going to have a little brother.
“Organ donation was an immediate thought for us. It was the only thing that was going to make sense. If a baby has to die, maybe there is something we can do to help another family,” she said.
Sebby’s kidneys were used in a rare procedure to create a single ‘super’ kidney, which saved the life of a young man dependent on dialysis.
“Knowing that Sebby gave another person a future gave us a small piece of comfort in an otherwise devastating moment,” Ant said.
Since then, the Symmonds have shared Sebby’s story to encourage others to register to donate. They talk openly with their two young children about their big brother and the hero he is.
“Dying a hero is an incredible final act,” said Ant.
It was DonateLife Week, a fact his parents only discovered later, after Edwina raised the topic.
Every year, the family celebrate Sebby’s birthday and every day, they remember him. They visit his memorial at Narrabeen Lagoon and scatter his ashes during family holidays around the world.
On her blog, Edwina wrote: “I ache when I think of how my sadness was directly proportionate to the joy that family felt when they received the fateful phone call. I am so happy a piece of my baby lives on.”
Ant’s message is simple: “The difference it [organ donation] can make to someone else’s life is profound, and to you, it is not going to make a difference.”
This week marks DonateLife Week (Sunday 27 July – Sunday 3 August), Australia’s national moment to spotlight the life-saving powers of organ and tissue donation.
Since 2009, more than 19,000 lives have been saved through 6,944 deceased donors. However, despite overwhelming public support, only 36% of Australians are on the Australian Organ Donor Register (AODR).
Manly Observer spoke to local families on both sides of the donation process, those who had been part of a donation, and also those whose lives changed by receiving one.
At just four and a half, Tianna Zilifian was given three weeks to live.
The Belrose resident was born with biliary atresia, a rare and life-threatening liver condition, she had spent most of her young life in hospital. Her tiny body was jaundiced, swollen from an enlarged spleen, and malnourished.
As her condition worsened, the only path forward became painfully clear: Tianna needed a liver transplant. Her mother began preparing to be a live donor, but before the surgery, a deceased donor liver became available. It was not a perfect blood-type match, but it was her best chance.
“The fact that my mum was willing to just give a part of her organ up to save me really meant a lot,” Tianna, now 19, said.
The surgery lasted 20 hours. Her spleen, swollen to ten times its normal size, had to be removed. The operation left her with 52 staples and a fragile but precious second chance.
The teenager is living that second chance with deep gratitude, but not without sacrifice.
“I do not have the typical teenage experience,” she said. Her days are shaped by daily medication, regular scans and health precautions. Travel abroad requires careful planning and alcohol is strictly off limits, but she admits it is a small price to pay.
Today, she is studying Midwifery at UTS.
“I can’t stay away from hospitals, but this time by choice,” she said.
“I had the best healthcare team, my nurses, my doctors, and because of them I just want to do something in the healthcare field.”
Tianna does not remember much before her transplant, something she believes is a trauma response. But she remembers the children she met in hospital, many still her friends.
Their stories, along with her own, inspired her monumental HSC art project: 3,300 paper cranes arranged into a 3D liver, each crane representing a day spent in hospital. Exhibited at Manly Art Gallery, the piece was surrounded with photographs and medical cabinets, which served as a powerful visual tribute to her journey.
Each anniversary, Tianna writes a letter of thanks to her donor’s family.
“I am very very upset and sad for the life that was lost. It always is upsetting knowing someone had to have lost their life for me to be here.
“Because of my donor, I have had fifteen more years and I plan to make every future year count,” she said.
Tianna’s mother once told her: “Every time your story is out there, even if it just attracts one new donor, that is still something, that is still lives that can be saved.”
Aidan Neale was born at 32 weeks, with a rare liver condition and became Australia’s smallest and youngest liver transplant recipient at two months old.
“He was a corrected age of five days old,” said his mum, Naomi.
The 12-hour transplant involved surgeons doing a hyper-reduction procedure to make the donor liver fit.
Rob and Naomi, of Belrose, had already endured profound loss. Their first child was stillborn and their second son, Angus, was born with signs of liver damage. A transplant originally seemed likely, but Angus recovered with early treatment.
When Naomi became pregnant again, she underwent regular immunoglobulin transfusions to protect the baby. Despite those precautions, Aidan was born premature and gravely ill.
Rob immediately lined himself up to become a live donor, but an organ became available.
“I feel really proud of my dad and I feel really thankful for him,” said Aidan.
Now aged 10, Aidan lives an active life, though contact sports are off-limits.
Naomi said: “The instructions were quite clear that body contact, body slamming, rugby is off the table, but touch football, they love it, and they are good at it.
“I am that proud mum who wants to say to everyone, ‘do you know what they have been through?’ because their start in life was horrific.”
For the Neales, organ donation is a permanent part of their story.
“Every donor family is representative of the gift that we were given,” said Mrs Neale. “We know the pain of losing a child is awful and if you can get just something that is beautiful out of it… what a legacy to leave for the person that has passed.”
The anniversary is treated with deep reverence in their household.
“Every year that is probably the most important day in our calendar,” said Naomi.
“We commemorate it, because we are so mindful that it is such a poignant day for us, but so sad – there will be a family grieving within the day or two of our transplant.”
Angus, Aidan’s protective 12 year old brother, said: “It is important to do [donation], because instead of putting your body parts to waste, you could give them to a family who really need it. I just want to say how grateful I am for Aidan to be in my life.”
The family now actively advocate for donation, with Aidan recently taking part in the Transplant Games, one of Australia’s largest awareness events, where he met others with stories like his own.
“We will never stop being thankful and never stop helping in any way we can to raise awareness of organ donation and make sure people understand the enormity of the gift we were given,” said Naomi.
Her advice to others is practical and heartfelt: “You have got to make your entire family aware of your wishes, because in that awful event, they need to know that was your wish and follow through with it.”
Juliana Celcer, Director of Nursing and Clinical Services at DonateLife NSW, oversees a statewide team of specialist nurses dedicated to organ and tissue donation.
A major hurdle in the system, Celcer explained, is the discomfort many people feel when talking about death.
“People do not like to have a conversation about death and dying,” she said.
Adding to the challenge is the rarity of eligible donors.
“Only about 2% of people who die in hospital, die in such a way that they can potentially be an organ donor,” Celcer said.
“Only about 2% of people who die in hospital, die in such a way that they can potentially be an organ donor.”
Families can consent for donation even if a person is not registered, but uncertainty makes their decision far more difficult.
“If they know your wishes and you are on the AODR, then 80% of families will say yes. If you are not registered and you have not had a conversation with your family, that drops to 40%.
“Your registration matters enormously and it makes it so much easier for your family if they should find themselves in those awful circumstances.”
According to DonateLife, NSW experienced an 11% drop in new registrations in 2024 compared to the previous year.
However, thanks to families who have shared their donation journeys, the Northern Beaches has a 57% registration rate among eligible residents.
The region also recorded 1,991 new registrations in 2024, second only to the Central Coast with 2,269.
With 1,800 people waiting for an organ transplant and 14,000 more on dialysis who could benefit, the message is simple: registering takes one minute, but it could mean a lifetime for someone else.
Register as an organ donor today at DonateLife.gov.au or through your Medicare account, and make sure your family knows your decision.
