At 12 weeks, mother-to-be Aleisha Koopman knew "something wasn't right" with her unborn baby.
After the "issue-free" birth of her first child, Ava (now five), she had "struggled a little bit" to fall pregnant again with her husband, Ben Gibson.
But just weeks into her second pregnancy, the young mum said she began to worry.
"I knew something wasn't right with this baby. I just couldn't connect," Ms Koopman said.
"And then at 18 weeks, she just wasn't moving inside me."
Ms Koopman said she constantly presented to the Mount Gambier hospital to be put on fetal monitoring "but they sent me home because they always got a heartbeat reading".
By 25 weeks, and after repeated visits and few answers, a subsequent ultrasound warranted a specialist referral.
Delayed by COVID-19 lockdowns, it was not until nearly 30 weeks that a specialist confirmed the baby's head circumference was "only in the first to second percentile".
Alone at the scan due to pandemic restrictions, Ms Koopman said the sonographer told her, "I've never seen this before".
"The whole pregnancy, from the earliest stages, was filled with questions, worry and uncertainty," she said.
A nervous birth
As the birth loomed, doctors warned the couple that the baby's brain was not developing properly and that she may not even survive the birth.
"The whole world came crashing down in that moment," Ms Koopman said.
A caesarean section was planned "to avoid putting any pressure on the baby's brain".
On the day of the delivery, Ms Koopman said the operating theatre was quiet and tense.
"When she was born, I held my breath," she said.
"They held her up to Ben and I, but I closed my eyes and prayed. I didn't want to know in that moment.
"But when I opened my eyes, she was here and she was perfect. I just cried."
The family bonded with their newborn and, after multiple tests and check-ups, were told, "she's fine".
Diagnosis confirms fears
But 10 days after Koa's birth, Ms Koopman said "it became clear that she wasn't fine, and we were straight back into hospital".
In the anxious two weeks that followed, filled with tests and an MRI scan, the family was finally given a diagnosis.
Their baby daughter, who they had named Koa for "warrior", had Lissencephaly.
The rare and incurable neurological condition affects about one in 100,000 babies, and typically leaves a one to 10-year life span.
It involves large parts of the brain failing to form folds and ridges so it instead has a smooth appearance.
The Koopmans were told the diagnosis meant Koa would never intellectually develop beyond four to six months of age and would never walk, talk or possibly even smile.
Koa had 'other ideas'
But Ms Koopman said Koa had "other ideas" and continued "to surprise and delight us daily, though her journey is a hard one".
"When she's well, which unfortunately isn't as often as we'd like, she has an aura about her," she said.
"She makes you feel very peaceful."
"We were told to expect very little from her … but that hasn't proven to be right.
"She is a gift. She is her own person."
Ms Koopman said the now 20-month-old "loves anything to do with nature — the sky, trees, the sound of birds and the ocean".
"She loves children laughing … she'll smile at any of those things. She'll smile when we sing to her, at her sister's voice."
Ms Koopman said she felt her biggest connection with Koa when they were in the water together.
"She just loves being in the water," she said.
But when unwell, which is a frequent state due to Koa's weak immune system, seizures and digestive challenges, Ms Koopman says "things can change very quickly" and they spend a lot of time in hospital.
Social media 'relieves isolation'
Ms Koopman said sharing the family's story on social media, including on Lissencephaly Awareness Day last Thursday, had helped her come to terms with her daughter's condition and to "not feel so alone and isolated".
"Her care is around the clock and I've used social media to help my friends, family and others understand what life looks like for us," she said.
"It's the joys, the highs and lows, the mundane and the heartbreaking."
Ms Koopman said she wanted people to be aware of children and families that "aren't so typical".
"A little bit of compassion towards families with special needs children means a lot to us," she said.
"Although we are blessed to live in a country with good services and support, it's only when you live this life that you experience where the needs truly lie."
Receiving generous support
Ms Koopman said the family had also experienced "the most phenomenal outpouring of generosity and support" from people from all walks of life since the birth of their daughter.
"I couldn't work for a year and it has changed our life completely," Ms Koopman said.
"Financially, it is a huge ongoing challenge — we need to get an accessible car, modify our home and of course, pay hospital and medical bills on top of all the other costs of raising a family."
Reflecting on Koa's journey to date, Ms Koopman said she was "continually amazed" by the toddler.
"The biggest thing for us is communication, and she has just learned to wave.
"Early on we were told we would have little to no chance of communicating with her — no-one could tell us how or if it would even be possible.
"We also thought she was blind. However, she continues to surprise and delight us every day with the things she can do."
"She tries to touch us. She babbles and it's beautiful. It gives us so much joy."
"We don't take a single day with her for granted."
