Steve Williams described himself as alive but not living, after being diagnosed with Cystic Fibrosis at just 26 years old.
“You’re born with it and I had a rare version of it that wasn’t picked up until later in life,” he said.
After being on oxygen and in a wheelchair for five years, he received two life-saving organ donations 13 years apart.
“In 1995 I had a double lung transplant and again in 2008,” Steve said.
He added that he kept in touch with his first donor. “Her husband had saved seven lives,” he said.
The donor recipient now takes part in the Gift of Life Walk – an event aimed at raising the organ donor registration rate in the ACT region.
When Steve was younger, he was told he’d be lucky to make it to 18. Now with 22-year-old twins, the 58-year-old is living life again.
“I look back and think ‘well I’ve gone 40 years over that’ and, as I say to people, the gift has been amazing. It’s given me another 27 years of life and I expect to have a lot more,” he said.
“I’m just so thankful to my donor families who offered their loved ones’ organs.”
Steve said he is a “vision” of what organ donation can give people, hence why he has participated in the The Gift of Life Walk a dozen times and looks forward to participating again this year.
“I remember the first year I did it [the walk] not on oxygen, it was just an amazing personal achievement for me,” he said.
The Gift of Life Walk has returned in 2022 and invites people to get together with friends and families to walk and raise awareness about organ and tissue donation.
Running for its 16th year, it encourages locals to open their hearts and help save peoples lives by registering as an organ donor.
Gift of Life president Catherine Scott said the Gift of Life Walk is one of Canberra’s biggest community walks to raise awareness on organ and tissue donation.
“In the past, our traditional walk is down here on Lake Burley Griffin … but unfortunately we can’t do that again this year, so we’re really encouraging people to sign up for our walk virtually through our website,” Catherine said.
“We just ask you to walk up to 5 km, anywhere, anytime and get a group of friends together or do it on your own.
“We’d really love to see people taking that next step and putting themselves on the organ and tissue donation register.”
Catherine is still registered to be a donor herself and said the number of registered organ donors in the ACT was “quite low”.
“I really want to encourage people to have those conversations with their families because it makes such a difference at such a difficult time in people’s life, if your family actually know your wishes,” she said.
The walk aims to get participants out there, posting their pictures on social media and getting the word out there to have those conversations.
Catherine said she’s heard a range of heart-breaking but amazing stories.
“To be out with such a generous group of people donating their organs and tissue is just amazing,” she said.
The Gift of Life Walk will return virtually from 1 to 7 April, inviting walkers to register their state or territory online, wear their Gift of Life merchandise and share their walking adventures using the hashtags #giftoflife and #giftoflifewalk2022 via social media.
Though the official walk around Lake Burley Griffin isn’t taking place, people are welcome to join a more casual walk at the Lake on Wednesday 6 April at 8 am.
For more information about the walk and how to become a donor, visit Gift of Life.