LACHLAN Page is literally the boy who should be dead.
Diagnosed with Edward Syndrome when his heart failed a week after his birth in 2010, the Maleny schoolboy needed resuscitation and his parents were told his symptoms were 'incompatible with life'.
That's a categorisation the rugby league fanatic has defied ever since, even though his father Rick's first waking action every day is to check whether Lachlan, who turns seven next month, has made it through the night.
Non verbal and unable to walk, he now "eats" via a peg in his belly and attends prep thanks to the support of two teachers' aides and modifications to the school which include a lift and covered walkways.
Edward Syndrome is a rare condition present in one in 7000 live births. It's even rarer for those affected to survive with studies since the mid 1980s finding that 50% die by one week of age and 90% don't make it beyond their first year according to the Centre for Genetic Education.
The condition, also known as Trisomy 18, occurs where there is the presence of all or part of a third copy of genetic material on the 18th chromosome.
Parents are left with the agonising choice of keeping their babies alive through neonatal intensive care aware of the Grim Reaper odds stacked against them or consenting to palliative care until they die.
The Page's chose life for Lachlan, a decision whose serious ramifications have been embraced with gusto by his family.
"The doctors consider he shouldn't be here," Rick said in the lounge room of a home being renovated so they can "move downstairs" to better accommodate Lachlan's mobility and growth.
The youngster is constantly dealing with a range of problems from his heart to his kidneys, requires a nappy through the day and his mother's help nightly with toileting that can take up to two hours.
But he has become a much-loved brother to two sisters who dote on him.
Rick, a former chef who is now Lachlan's full time carer, retrained as an optical mechanic making the glasses his optometrist wife Rachel prescribed at their two practices in Brisbane.
They closed the businesses and relocated to a Maleny practice 10 years ago returning Rachel, a former Buderim girl, to the Sunshine Coast of her youth.
The pressures of Lachlan's condition ultimately proved to difficult to juggle with a busy business forcing them to close it two years ago.
While Rachel now works in another practice Rick heads to the coast on weekend nights doing Uber shifts until two or three in the morning.
Its a job he says brings in extra cash for the household and gives him the adult contact he misses in a life now spent largely at home.
"Lachy's starting to become verbal now," Rick said. "He's at the stage of a three-and-a-half year-old. We are hoping from what we are seeing that he will continue to advance.
"Lachlan has achieved everything we were told he wouldn't. I have high hopes for him.
"He started Prep last year and has advanced quite a bit from when he started."
In consultation with his teachers it was decided Lachlan would repeat Prep this year before advancing to Year One in 2018.
Enrolling a child of high special needs in a mainstream school was not without its difficulties, the family first having to put the case as to why Lachlan would benefit more than attending Special School.
"The Department of Education was hesitant but the school was helpful from the start," Rick said.
A past five-term president of the Maleny State School P&C he says the special equipment, lift and covered footpaths required benefited the school as a whole and paved the way for other kids with disabilities to attend.
Principal John Byrne described Lachlan as an awesome kid whose face lights up when surrounded by his class mates.
"The school has a wonderfully supportive and inclusive culture which is reflective of the wider community," Mr Byrne said.
Sharon Furlong who heads the school's enrichment centre said Lachlan had been really accepted as part of the prep class.
"The kids love Lachy," she said. "They look forward to him coming to school. When he's not there they ask where he is."
The roll out of the National Disability Insurance Scheme offers hope for greater support for the little battler who has defied the odds but for now while Lachlan has a health care card, Rick does not receive a carer's pension and there is no respite support.
"He doesn't fit any standard categories of disability," Rick said.
However Home Assist have been of enormous help and the family has won the backing of the Board Meeting surf charity which has equipped Lachy with hideously expensive stand-up walkers and all terrain wheel chairs the cost of which run to thousands of dollars.
"The Board Meeting has helped Lachlan walk," Rick said of the stand-up, wheel chair like device that can bring him close to eye height with his class mates.
"There is no way we could have got that equipment through the government."
Lachlan can move himself around on the ground commando-style and is happiest sitting in front of the television watching a rugby league game.
"Lachlan has surpassed every expectation," Rick said.
"There is no way he should still be with us today."