By Brett Kennedy
A campaign for an Armstrong Creek baby born with a rare and incurable brain malformation has drawn support from across two states.
Former Mount Gambier woman Aleisha Koopman and partner Ben Gibson say they are living “every parent’s worst nightmare” after eight-week-old Koa, their second child, was diagnosed with Lissencephaly – a genetic condition impacting large parts of the brain which are smooth with no texture.
The condition afffects about one in 100,000 newborns.
Ms Koopman said the family 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.
The family currently travels the hour-plus trip to Melbourne where Koa is being treated at the Royal Children’s Hospital by specialists.
About $18,000 has already been raised for Koa via GoFundMe.
“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.
Donations can still be made through www. gofundme.com/f/help-support-baby-koa-herfamily. Ms Koopman has vowed to keep the community updated with Koa’s progression through @koa_eve Instagram page.
