A BENDIGO family will get access to government support to help care for their young daughter's complex medical needs, after weeks struggling with bureaucracy.
Six-month-old Ally was born with the rare Moebius syndrome, causing facial paralysis.
Her family was initially told they were ineligible for support under the National Disability Insurance Scheme, because of Ally's age.
But the family was told late on Friday they had been accepted into the scheme after the Bendigo Advertiser made inquiries with the relevant agency.
It's not yet known exactly what support the family will receive.
In the days after birth Ally had several episodes where her breathing stopped, meaning the family spent months in a Neonatal Intensive Care Unit.
But after her discharge parents Molly and Joel Davis struggled to access support for caring or medical supplies through any government agency.
They were been told they were ineligible for any funding from the NDIS because of Ally's age, despite her need for constant monitoring.
Mrs Davis said Ally was now doing relatively well after an operation to her jaw, but not having access to support was a constant struggle, given her high needs.
Born with facial paralysis, club feet and a cleft palate, Ally had several episodes early in life where her breathing stopped and she was rushed to hospital.
She spent months in the NICU breathing through a ventilator.
A jaw surgery to help keep her airways open in August was successful, avoiding the need for a tracheostomy.
Mr and Mrs Davis brought Ally home at the end of August, after more than 60 days in Melbourne's Royal Children's Hospital NICU.
It was just a week after she was taken off a ventilator and started breathing on her own.
Ally is now thriving at eight kilograms. But she still has trouble managing her saliva secretions and must be fed through a feed line.
She faces a future full of unknowns.
Despite Ally's serious medical condition, the family were told they were ineligible for NDIS support.
Mrs Davis said her pediatrician had written on Ally's paperwork that she required two full time carers.
Instead, it has just been Mrs Davis as Ally's full-time carer supported by her husband, family and friends. She said every corner they turned, there was a new cost.
Mrs Davis said NDIS partner Intereach had told the family they were ineligible for support, because all children Ally's age were demanding.
But Mrs Davis said most children Ally's age didn't need their breathing constantly monitored by someone trained to do so.
"Ally's not a baby that you can drop off at Nanna's to go and do the groceries," she said.
"There's no respite, or no help for me now, which is in a period of grief, when things are the hardest and she's the most demanding."
Mrs Davis said the family was lucky to have the aid from thousands raised in a GoFundMe, but she wondered how someone in a different situation would be able to manage.
She said the family was now spending hundreds of dollars each month on medical equipment to keep Ally alive, although they would eventually receive carers allowance and a concession card.
This came on top of the costs of time taken off work and weekly trips to Melbourne, she said.
Mrs Davis said more support for families in a situation like theirs was critical.
"We're okay thanks to everyone's generous contributions, that GoFundMe has been amazing, but I just wonder if someone didn't have that support, what would happen?," she said.
"These are conditions that she's born with. She needs us to stay home and stay safe, I can't fathom that there's any out of pocket expenses."
Support under the NDIS is available for Australians aged seven to 65.
The families of children under seven with a developmental delay or disability are eligible for support from the Early Childhood Partner, which can include connecting parents with supports, some short-term early intervention.
These partners may also help families request NDIS access if their child requires longer-term early childhood intervention supports.
Bendigo MP Lisa Chesters said difficulty accessing adequate respite care for families was a real failing of the NDIS system, that she heard of frequently from her constituents.
She called for consistency within the NDIS and the delivery of support for children with health conditions or disabilities.
"Lots of parents of young children have issues accessing adequate respite under the NDIS plan, or any other scheme that may exist," she said.
"It's a real failure of the NDIS [and] health system that we don't have enough opportunities for local families to access respite ... regardless of the age of the child."
Difficulties aside, Mrs Davis said it was wonderful to have Ally back home, after months spent in the NICU.
She said it was bizarre to go so quickly from "never-ending unknowns" to talk of discharge, then for her and Mr Davis to wake up with Ally in the same room.
Support from family and friends was vital to making the transition from the safe, sterile environment of NICU.
But Mrs Davis said returning had also involved facing the grief of the trauma associated with Ally's episodes and time in NICU.
Mrs Davis said Ally's future was still full of unknowns about what her condition would mean.
"[I] ebb and flow between those days ... where I feel just such gratitude from where we've come to where we are, and other days to where I think, 'Oh my gosh, why us?'," she said.
A NDIS spokesperson told the Bendigo Advertiser that the agency had been in contact with Mr and Mrs Davis and was working with them on the matter.