Since Gabriel Sebastian was calved with a uncommon familial information 17 months ago, his parents person ne'er near his side.
His wellness is truthful precarious helium has spent his full beingness successful the Edinburgh infirmary wherever helium was born.
And his mum and dad, Teena Thomas and Sebastian Paul, person not spent a azygous nighttime successful their ain location since then.
The couple, who are primitively from Kerala, India wherever a father's archetypal sanction is utilized arsenic a surname, present person their ain country successful the hospital.
They are preparing to walk their 2nd Christmas there.
Their archetypal denotation of Gabriel's wellness problems came erstwhile Teena had a scan erstwhile she was 5 months pregnant.
The representation of her babe lad flickered connected the surface and everyone stopped talking - thing was wrong.
The mates were told his bones "weren't truly there", his spine was hardly developed, his arms and legs were excessively abbreviated and it was improbable helium would survive.
They were asked to deliberation astir terminating the pregnancy.
Teena told BBC Scotland News they were terrified.
"Sleep became impossible," she said. "How bash you adjacent statesman to marque that benignant of decision?
"Lying awake, I could consciousness him moving truthful strongly, similar helium was saying, 'I privation to travel into the world, Mama.'
"How could we not combat for him?"
Tests revealed their babe had Spondyloepimetaphyseal dysplasia - a familial information truthful uncommon that nary 1 could foretell however it would signifier his life.
He would beryllium short, could person facial abnormalities, possibly brittle bones and determination was a 50% accidental that helium would beryllium stillborn.
"We prepared for the worst but clung to hope," Teena, 32, said.
"One scan showed him sucking his thumb. Surely that meant his bones had immoderate strength? We dared to believe."
They bought a Moses basket, decorated his country and thought they would beryllium successful infirmary for conscionable 5 days.
Gabriel was calved by cesarean conception connected 2 June 2023 and has been successful the Royal Hospital for Children and Young People successful Edinburgh ever since.
"They didn't enactment him connected my chest, didn't adjacent hold to cleanable him. I got to interaction his tiny digit - past they scooped him up and ran," Teena said.
He was taken to intensive attraction and instantly intubated.
They were fixed a country successful the hospital's parents' accommodation tally by Ronald McDonald House Charities.
It is 1 of 25 rooms connected the apical level of the children's infirmary wherever families tin enactment escaped of charge, for arsenic agelong arsenic they need.
"This was 17 months ago. We've been present ever since," Teena said.
Gabriel endured endless tests, X-rays and scans. His thorax was excessively small, his ribs underdeveloped and helium was incapable to respire unaided.
At 2 months old, helium had his archetypal large surgery, a tracheostomy - a spread successful his windpipe to springiness him an alternate airway for breathing.
But it came with caller fears. Now, if helium moved excessively much, the conduit could block, cutting disconnected his airway.
"The archetypal clip this happened was horrifying," Teena said.
"One infinitesimal helium was fine, the adjacent his bosom complaint plummeted, helium turned bluish and went acold successful my arms."
For months, emergencies similar these were happening each different time and the mates asked doctors if they would ever beryllium capable to prevention their child. They couldn't springiness them an answer.
"I've ne'er heard his dependable due to the fact that you request aerial to walk done the dependable container but the spread successful his cervix for the ventilator is beneath that," Teena said.
"It makes maine outcry erstwhile I spot him crying silently."
In the meantime, Teena has returned to enactment arsenic a idiosyncratic portion Sebastian has continued his vocation arsenic an engineer.
They person arranged their moving hours truthful 1 of them is ever with Gabriel.
Through it all, determination are fragile moments of joy.
The time aft his archetypal birthday, aft 366 days of surviving successful the children's hospital, their lad yet felt sunlight connected his face.
He had begun to tolerate his portable vent and could spell outside.
Teena said: "Gabriel's grin is the astir almighty thing.
"Through each invasive operation, each achy procedure, each heart-wrenching emergency, helium comes backmost smiling. And that keeps america going.
"That, and the extraordinary, superhuman NHS teams astatine the hospital."
The Roman Catholic mates person been told that Gabriel won't beryllium capable to spell location for Christmas.
Instead the household person been asked to power connected the Christmas lights astatine the infirmary astatine the extremity of the month.
Pippa Johnston, lawman CEO astatine Edinburgh Children’s Hospital Charity, said: "Gabriel and his household are inspirational and person shown truthful overmuch spot and resilience done an unimaginably hard time.
“While galore radical volition caput location to beryllium with household this Christmas, the bittersweet world is that galore children similar Gabriel, and their families, volition walk it successful infirmary instead.
"Together with the NHS, we enactment hard to bring the sparkle to marque definite families similar Gabriel’s don’t miss retired implicit the festive season.”
Gabriel's aboriginal is uncertain. Doctors don't cognize if helium volition ever respire connected his own, talk oregon eat. Recently they discovered his encephalon is shrinking.
Last Christmas, helium was excessively unwell for it to beryllium thing different than "another scary day".
Teena said this twelvemonth Edinburgh Children's Hospital Charity was pulling retired each the stops to marque it 1 for him to remember.