THE Limestone Coast is rallying behind a young family whose newest member, eight-week-old Koa, has been diagnosed with a rare and incurable brain malformation that carries a life expectancy anywhere between one and 10 years.
Former Mount Gambier woman Aleisha Koopman and partner Ben Gibson say they are living “every parent’s worst nightmare” after Koa, their second child, was diagnosed with Lissencephaly – a genetic condition impacting large parts of the brain which are smooth with no texture.
Ms Koopman said the family – now based in Armstrong Creek near Geelong – had been given a long list of human functions Koa is unlikely to achieve, including walking, talking, smiling and laughing – with daily seizures also a reality.
Despite the devastating diagnosis, Ms Koopman said the family was buoyed by hope and strong support flowing from both South Australian and Victorian supporters, as well as early signs of defiance from Koa whose name is apt given its meaning of “warrior” and “brave one”.
“They said she would never smile but we believe she is smiling,” Ms Koopman said.
“They also said she might not be able to hear but her hearing is at 99pc,” she said.
“We think she is blind but who is to say she might not be able to see one day.”
Throughout the optimism it has been an unfathomable experience for the young couple, also blessed with three-year-old Ava, who were made aware of potential growth complications during Ms Koopman’s third trimester.
Ms Koopman said she was told Koa’s head appeared to be developing slower and appeared small but was given no indication of the potential for an incurable and terminal disease.
“When she was born we looked at her and she looked perfectly fine – we were so elated,” Ms Koopman said.
Within 10 days Koa’s health started to deteriorate as the newborn showed signs of health issues, hospitalised due to the brain malformation’s impact on her respiratory system.
After a series of ultrasounds, X-rays and an MRI, the family received the shock diagnosis – a condition affecting around one in 100,000 newborns.
“The diagnosis was quite quick but it seemed like an eternity for us,” Ms Koopman said.
“The news we got was the worst news in the world,” she said.
“We are now just finding ways of accepting it and getting on with our life.”
For Ms Koopman that will mean being Koa’s full-time carer, with up to three medical appointments per week and regular hospital stays predicted.
The family currently travels the hour-plus trip to Melbourne where Koa is being treated at the Royal Children’s Hospital by specialists.
It has been a challenging 12 months for the family after Ms Koopman – a travel agent – was heavily impacted by COVID-19 travel restrictions, while the young couple’s wedding – slated for September last year in Fiji – was also cancelled with the pair unable to recoup finances as pre-paid businesses declared bankruptcy.
Ms Koopman’s father Trevor – who lives in Mount Gambier with wife Debra – has also been battling his own private health battle during this time.
Around $18,000 has already been raised for Koa via GoFundMe, while several Limestone Coast businesses have planned fundraisers.
“Having all this support from the community means financially, it is one less thing to worry about,” Ms Koopman said.
“I will be a full-time carer so having this help is massive,” she said.
“I want to say a big thank you to the community around my Mum and Dad too, they are receiving a lot of support back home and that is appreciated – I know they’re grateful.”
Donations can still be made through www.gofundme.com/f/help-support-baby-koa-her-family.
Cafe Melzar and Brew Coffee Bar will both donate $1 from every coffee sold this weekend to the family.
A major fundraiser is also being planned at Blue Lake Public Golf Links and donations are being collected at Country Post and Bistro at Glencoe.
Ms Koopman has vowed to keep the community updated with Koa’s progression through @koa_eve Instagram page.
“I hope Koa’s here for a long time but realistically they don’t expect her to live past 10 years of age,” Ms Koopman said.
“For me, the page is giving me some form of solace to share her story,” she said.
“I just hope that whatever time she here, it makes an impact.”
