RACHELLE and Stewart Reeve were told early in their pregnancy that their baby boy may not live long after birth.
Doctors had identified some problems with his arms and legs, and that he may have a metabolic disorder.
It was an "awful", anxious introduction to parenthood.
But Elias, who was born with amyoplasia congenita - a condition that prevented the muscles in his arms and legs from properly forming - is set to celebrate his 11th birthday in September.
"Eli - still to this day - can't move his hands, can't move his elbows, can't move his shoulders," Mr Reeve said.
"He can swing his arms at the shoulders. He has some use of his toes. He has some flexion in his legs, but he really can't use his legs. It's a pretty serious and severe form of the condition he has, and it sucks, to be quite honest. It sucks a lot."
The Morpeth family has managed to get by without many of the things they have needed - largely because Mr Reeve has been able to lift him - but as Eli grows, the time for that is running out.
"We get by at the moment with me plugging the gaps physically," Mr Reeve said. "He is about 40 kilos, maybe a bit more, and I lift him into the car, I lift him for toileting, I lift him for bathing, I lift him to get him into bed.
"I shouldn't be doing it.
"But if I don't, our life stops dead. But that's coming to an end - I won't be able to do that for too much longer. It is becoming too hard. My wife's back is already stuffed. It's down to me."
The family, surviving on a single, part-time wage, is raising money via Go Fund Me to buy a wheelchair van to give Eli a life outside their home, and outside of school. They had found the NDIS to be "ok", but had waited weeks-to-months to get responses, if any, from suppliers and therapists.
"We haven't gotten things that therapists said we should have had five-to-eight years ago," Mr Reeve said. "We still haven't got a wheelchair van, we still haven't got a powered wheelchair, we still haven't got a proper toileting system because we have had failure, after failure, after failure.
"And we're not being precious - it's literally a lot of neglect because we're not easy.
"Some things for people with disabilities can be bought off the shelf. We're not off the shelf. Nothing is off the shelf for us. Eli is put in the too hard basket. And in their defence, he is hard. His condition is severe."
Mr Reeve said the NDIS would only fund a portion of the modifications required for their van, and it would only pay to modify new vehicles. They have already raised about $70,000 - but they need another $40,000 to cover the total cost of the van.
"The NDIS is a good system, but it's a very hard system to get right. It has its problems, but there is also a lot of providers and middle men making a lot of money doing easy things, and neglecting hard things," Mr Reeve said.
A wheelchair van would make a "huge difference" to Eli's quality of life.
"The van will mean a huge amount to us," Mr Reeve said. "It means Eli can actually have a life outside of home. And outside of school.
"At the moment, we almost never do anything.
"We go out sometimes on the weekend, maybe somewhere like Stockland Greenhills, where they have a hoist change room - which is a wonderful asset.
"Eli is quite limited. That being said - and I don't say this tritely - he genuinely has a good outlook on life. And he is one of the best people I know - even among adults.
"He is highly intelligent, very wise, very social, and he has a zest for life that others don't, despite his severe limitations."
Amyoplasia is a form of arthrogryposis, which can be "quite mild", Mr Reeve said.
"It might be someone having a soft tissue disorder in say, their elbow, and they just have trouble stretching it out fully," he said. "Unfortunately for Eli, it has affected basically all of the muscles in his arms, and all the muscles in his legs.
"But he has enough muscle form in his glutes, and some parts of his legs, that he can walk on his knees - which is an amazing blessing, and something for which we're very grateful."
Visit au.gofundme.com/wheelchair-van-for-eli-reeve to support the family.
