Grace Hughes, the little girl who does not eat, is facing a new challenge: how to get teacher aide assistance so she can go to school.
The 5-year-old made headlines earlier this month with her plight and her family's quest to take her to Austria for specialised treatment.
Response from that coverage had been "brilliant" and an "overwhelming amount of support" had been shown for the family, Grace's mother, Pip Hughes, said.
Now the family were focusing on how to get Grace the support she needed to attend school.
They had hoped she would be able to start school next term but that was in doubt after she was turned down for Ongoing and Reviewable Resourcing Schemes (ORRS) funding because she did not met the criteria.
The funding provided assistance for individual pupils with high and very high special education needs.
Grace does not eat, is fed through a tube in her stomach, has difficulty communicating and can not toilet herself.
"It's ridiculous," Mrs Hughes said of the funding refusal.
It came down to Grace's diagnosis being unknown, she said.
The family planned to appeal the decision, but that would take time.
They would also look into other avenues for support, such as high health-need funding.
"It's so frustrating."
Grace could continue to attend kindergarten until she was 6 next July.
Balaclava School acting principal Wendy Lamond said she was "astounded" by the decision, which suggested Grace had no problem with language.
If Grace did not qualify, she asked who did.
"Children need access to education, so why should her learning be precluded by inadequate support?"Mrs Hughes said family and friends were working at fundraising initiatives, and the trust fund set up for Grace was rising steadily.
"I'm confident we'll get over there [to Austria]. People have been very generous."
As well as a quiz night being put on by St Clair Kindergarten on September 9, a magic show for children was planned on September 12 and a fundraising silent auction on October 15.
