A former Hawke's Bay family now living in Australia are in fundraising mode after discovering their child has a serious health condition.
Because they are not Australian citizens they have very little financial support for his expensive specialist treatment.
Five years ago Lisa Pyper and her husband Michael Ramsay moved from Hawke's Bay to Yeppoon in Australia. Their son Fred was born just over a year ago.
Life was never straightforward for Fred who was sickly from the start.
He never slept well and required regular doctor and hospital visits for a rattly chest, respiratory problems and tonsillitis, Pyper said.
But it was the day before his first birthday on March 16 this year, that his parents learned the extent of his ill health. Testing revealed Fred had a rare genetic syndrome, Phelan McDermid or PMS, thought to affect 2.5 people out of every million.
PMS typically caused moderate to severe developmental and intellectual impairment, most sufferers did not acquire functional language, and about 75 per cent were diagnosed with some level of autism.
Sleep disorders were common as were problems with swallowing and eating, and about 40 per cent of people developed seizures.
Pyper said Fred had not developed autism or had seizures so far, but since he was born life had been a continuous round of doctor and hospital visits, as well as specialist therapy to help with Fred's eating and movement.
"Fred is generally a happy little man who brings a lot of joy to us – we do not see anything wrong with him, for us he is a normal boy.
"My husband and I have good and bad days but we waited a long time to have this little man after losing a few babies."
She said although no one wanted their child to have difficulties, they were very thankful to have Fred and knew there were people worse off.
What made the situation more stressful, however, was because they were not Australian citizens (including Fred even though he was born there), he was not eligible for government funding or the National Disability Insurance Scheme assistance.
Pyper paid a healthcare levy but was not reimbursed for the significant time she took off her work in healthcare, or any support to pay for his specialist therapy, which cost about $180 an hour.
"This could be needed for three to six hours a day over a two to three week period.
"There's also ongoing regular specialist support such as speech therapy and physiotherapy."
As such she and her family had started fundraising and a GoFundMe page had been set up to try to raise $25,000 to help with costs.
To date the page had raised almost $10,000.
"This is a long-term thing – we are looking at becoming permanent residents but that costs a lot and it's not even sure if they would grant it to Fred with his condition."
The pair had four older children to other partners, and Pyper's two other children lived with them in Australia.
After Fred's diagnosis, the couple had undergone genetic testing to check for any mutation that would affect the older children.
A local fundraiser to support Fred's fight and contribute to his medical needs was being held this weekend with the Hawke's Bay Express offering "Rides for Fred", 30-minute children's city tours around Napier, on Saturday.
The train will run every half hour from 10am to 1pm from Napier iSite - adults $10 and children $5 (but must be accompanied by an adult).
To contribute to the online fundraiser go to https://www.gofundme.com/fred039s-fight