A little girl pleaded with Australians to help her save her terminally ill sister after changes to her NDIS plan caused her to lose access to intensive care.
Three-year-old Koa Eve Gibson was diagnosed with a rare and incurable neurological disease called lissencephaly when she was just five weeks old.
The boy from Geelong, 75 kilometers southwest of Melbourne, also suffers from advanced cerebral palsy, chronic lung disease and a host of related conditions.
Koa, or ‘Koko’ as she is known to her loved ones, is currently receiving palliative care at home where she lives with her two sisters, six-year-old Ava and 10-month-old Sky, and her loving parents Ben and Aleisha. .
On Thursday, Gibson posted a video of Ava pleading for Koa’s life moments after discovering her NDIS package had been cut by 55 per cent.
‘Will Koa survive without all this help?’ -the girl asks her mother crying.
‘It will? I don’t want her to not live. What if she doesn’t live without all this help? Do the caregivers want to leave?
“I want her to live.”
The mother of terminally ill three-year-old Koa Gibson in Geelong posted images of her older sister Ava pleading for her life after they discovered her NDIS funding had been cut.
Koa (pictured with her older sister Ava) was diagnosed with a rare, incurable neurological disease called lissencephaly when she was just five weeks old.
Gibson says her daughter Koa’s caregivers don’t want to leave and that she will “fight very hard” to make sure that doesn’t happen.
In an Instagram post, the mother of three detailed the extent of the NDIS cuts.
‘Today I received a painful message. The NDIS couldn’t even allow my family the decency to talk to me,” she wrote.
‘Instead, they emailed my support coordinator at 4:59 pm (1 minute before closing time, so we couldn’t speak to them) about a decision they made yesterday but didn’t They had the courtesy to let me know that same day.
“They waited over 30 hours and sent an email.”
Ms Gibson revealed funding had been cut for Koa’s nursing life support, wheelchair accessible car, music therapy and Guide Dogs Australia therapist.
He said the NDIS had reduced the girl’s therapy budget and did not “believe she needed a comfortable, relaxing but supportive chair at home”.
“So she’ll just keep lying on the couch,” he continued.
‘They warned you that no amenities are offered, that hydrotherapy is not allowed, that musical joy is not allowed, they have CUT OFF all joy and human basics.
“But you see, Koa finds joy in the simplest things and they have been taken away from him.”
Funding for three-year-old Koa’s nursing life support, wheelchair accessible car, music therapy and Guide Dogs Australia therapist was cut this week.
Aleisha Gibson says her terminally ill daughter Koa is just a ‘cost-cutting exercise’ for the NDIS
Koa relies on oxygen tanks and the help of medical professionals to stay alive and suffers more than 120 seizures a month.
Gibson said his daughter was simply a “cost-cutting exercise” for the NDIS.
“She will die and this will be negligence in the NDIS,” he wrote.
‘With inhumane employees who lied to us today and did not notify us, the decision was made. She is a human. My child. My baby.
‘NDIS you have failed a sweet, innocent girl. But you won’t hear the last of me, I will fight to the death of her… I will NOT let you do this to another sick and dying child!’
TO GoFundMe is raising money to help the Gibson family buy their own wheelchair-accessible car so Koa can get out of their house.
“Our greatest dream for the Gibsons is to be able to spend a family vacation, a feat that has been nearly impossible to achieve to date,” organizers wrote.
‘On top of this, Gibson’s medical bills are absolutely enormous, including the electricity bills needed to run his medical equipment 24 hours a day.
“This team literally keeps Koa here with us and as comfortable as possible.”
Daily Mail Australia has contacted the NDIS for comment.
