‘It’s like they want her to die’: Koa Gibson’s family’s appeal for support
An Armstrong Creek family is pleading for continued NDIS support to make memories with their three-year-old daughter in the final months of her life.
Geelong
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A dying girl’s family says the National Disability Insurance Agency (NDIA) is reducing her support as the three-year-old battles multiple health problems.
Parents Aleisha and Ben Gibson, of Armstrong Creek, said their three-year-old daughter Koa entered palliative care in January.
They said a new National Disability Insurance Scheme (NDIS) plan, which is coming in this week, would see 24-hour nursing replaced with high-intensity support workers for less hours per day.
“She’s not getting better and they’ve taken all the nurses away that keep her alive, we don’t know why,” Mrs Gibson said.
“It’s like they want her to die.”
An NDIA spokeswoman said Koa’s NDIS funding had not been reduced.
“We would like to acknowledge the incredibly difficult situation Koa and her family are facing,” the spokeswoman said.
“The agency is working to approve a new plan in the comingweek.”
It is understood evidence received by the NDIA from health professionals confirmed her need for nursing hours were high, but indicated she did not require 24-hour care, and a letter from the Royal Children’s Hospital recommended support workers.
It is also understood Koa’s family has been connected to a palliative care team.
However, a letter seen by the Geelong Advertiser from Koa’s local nursing team said: “Koa requires a very high level of care 24 hours a day including overnight.”
A Department of Health spokesman said palliative care was available across Victoria from public health services to ensure those at the end of their lives have quality care and comfort they rightly deserve.
Koa has Lissencephaly, a congenital brain abnormality that impacts motor skills, eating and drinking, communication and learning.
She is dependent on life support oxygen and has chronic lung disease.
She also has severe dystonia, cerebral palsy, cortical vision impairment, hypotonia, epilepsy, scoliosis, precocious puberty recurrent aspiration pneumonia, and suffers from daily seizures.
Mrs Gibson said the family felt let down.
“I don’t have the medical training to keep her alive,” she said.
“She’s going to die and it’s going to be on my watch.
“She needs intervention to cough because mucus blocks her airway multiple times an hour and we have to unblock it.
“She’s in hospital at the moment and I am so scared for when she comes home because we will have to do (medical tasks) on our own.”
Mrs Gibson said they would lose their wheelchair accessible car due to NDIS plan changes.
She said Koa weighs 22kg after experiencing puberty at two years old prompting a growth spurt.
“NDIS said I could lift her in and out of the car but I can’t,” she said.
“They also said to use wheelchair taxis which are impossible to get and my other two children need car seats so it’s a joke.”
Mrs Gibson was emotional as she said people with sick children don’t want to fight agencies.
“Time is the biggest gift and they’re taking it away,” she said.
Family friends have established a GoFundMe, www.gofundme.com/f/please-help-koa3-the-warrior-princess-and-her-family.
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Originally published as ‘It’s like they want her to die’: Koa Gibson’s family’s appeal for support
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