After being born at 30 weeks weighing just one kilogram, Anakin Kapodistrias has a fitting first name.
"When he was born, my husband was actually looking up names and we wanted a name that started with 'A' to match his sister," his mum Amrita said.
"And Anakin apparently means 'warrior' and 'fighter'. We thought that was a good one because he had already been fighting through my pregnancy and had another three months in hospital before he could come home and even after that he's had all these challenges to face."
Amrita's waters broke at 23 weeks when the family contracted Influenza A. She was on bed rest until Anakin was born.
Anakin turned three last week, continuing to stand up to the challenges of cerebral palsy, seizures, sleep apnea and hearing loss. His birthday was a moment to pause, reflect and remember the small delights of life.
"He asked for 'brown cake', which means chocolate cake," his mum said, with a laugh.
On Sunday, October 25, families across Australia will walk in support of the 48,000 babies born sick or born before 37 weeks gestation across the country each year.
Walk for Prems 2020 is the largest fund raiser for the Life's Little Treasures Foundation, a charity dedicated to supporting the families of babies born sick or early.
The charity is advising participants to this year walk in small groups on a route of their choice covering 5km on October 25.
The Kapodistrias family, of Isaacs, did the walk last year and will do so again next weekend, using it as a marker for what has been a difficult but also life-affirming 12 months for them.
The family has remained in lockdown at their home since March, still worried about the threat of the coronavirus, despite no reported cases in Canberra.
They say Anakin is immune-suppressed and vulnerable, while the family's experience with Influenza A has also made them cautious.
"Since then, we've just been extra careful with respiratory illness, so the pandemic has been a difficult time for us," Amrita said.
She and her husband, Isaac, both public servants, have been working from home, doctor's and therapist's appointments have been done virtually and groceries have been ordered online.
Their daughter Ariana, nearly five, has just been diagnosed with autism. She will start kindergarten next year. Anakin's paediatrician has advised the family to "hold out for a vaccine" and keep him at home until then.
It hasn't been easy but they have remained positive.
"After we went through in 2017 and having to leave Anakin in hospital for three months, it's been almost nice to spend some time together and to cut down on a lot of external things," Amrita said.
"We just had more time to ourselves which, really, for the past three years we haven't had, running around a lot to appointments. It's almost been nice to take a break from real life and enjoy the time with both the kids."
- To register for the Walk for Prems go to walkforprems.org.au.