A CABRAMATTA couple is in desperate need of funds to buy a special bed for their seriously ill son.
Kobi Doyle, 4, spent the first nine months of his life in the intensive care ward of The Children's Hospital at Westmead.
Kobi cannot speak, swallow, eat, sit, crawl, stand or walk and he breathes with the help of a tracheostomy, which needs to be changed once a week.
He is also fed daily through a feeding peg in his stomach.
Kobi's father Grant Doyle said he had no choice but to be the full-time carer of his son.
"I'm on a pension but that doesn't provide enough money to cater for Kobi's needs," an emotional Mr Doyle said.
"Kobi has outgrown his cot and now needs a new bed, but Enable NSW, who helps me provide medical equipment for Kobi, have asked me to pay for half the price which is $2000.
"That's two months' pension for me and even if I didn't spend a dollar of that, I still couldn't cover the cost. I just can't afford it."
Kobi, who has numerous congenital abnormalities, was born at Fairfield Hospital on October 2, 2009.
He was taken to Westmead Children's Hospital for some tests after he was found to have trouble feeding.
"His biggest problem was breathing difficulties but he has also had numerous cardiac arrests," Mr Doyle said.
"Doctors were unable to diagnose what was causing this and they still don't know what is wrong with him."
Kobi's official diagnosis is "undiagnosed syndrome".
"Kobi has been used as a case study by doctors all over the world," Mr Doyle said.
"They said it's definitely some genetic syndrome but they just don't know what."
Mr Doyle said he called Premier Mike Baird's office, Disability Services Minister John Ajaka and Health Minister Jillian Skinner asking for funding to purchase Kobi a bed.
"They all brushed me off except for the Premier's office who said they would would pass on my request to the relevant minister," he said.
"It's just so frustrating because I see advertisements on TV about the National Disability Insurance Scheme and how it changes the lives of disabled people and yet here I am struggling to get anything done."
To help the Doyle family raise funds to buy a bed for Kobi, make a donation: Account Name: Cabramatta Rugby League Club Ltd; BSB: 062-130; Acc: 11174320; Reference: Kobi.