A baby boy has never felt fresh air or seen natural daylight.
Arlo Newcombe suffers from a lung disease that means he must be permanently hooked up to machines and confined to a four-foot corner of a hospital.
He celebrated his first birthday on Tuesday, which he spent bedbound and surrounded by wires and tubes, instead of at home with his family.
His condition, known as surfactant ABCA3 deficiency, is so rare it has never been seen in the UK before and requires Arlo spends every minute attached to a powerful ventilator to help his weak, tiny lungs to function.
Arlo’s parents, Mike, 39, and Chantal, 36, from Bromley, London, may never be able to take their baby son home.
WHAT IS CHILD INTERSTITIAL LUNG DISEASE?
Children’s interstitial lung disease (chILD) is a group of rare lung conditions found in infants, children and teenagers.
It affects the interstitium – a network of tissue that supports the air sacs.
Inflammation or scar tissue builds up in this tissue.
This makes it harder for the lungs to inflate and for oxygen to get into the blood through the lungs.
There are more than 200 types of chILD.
These conditions are long-term, but treatment can sometimes help prevent more damage and infections, and reduce symptoms.
Oxygen therapy is a common treatment.
In rare, extreme cases where other forms of treatment have failed, the child may be offered a lung transplant.
Although lung transplants have been shown to be an option for some children, a high proportion who have the transplants develop serious complications.
Source: British Lung Foundation
Arlo’s condition is an exceptionally uncommon form of child interstitial lung disease.
Although there is no cure for the the illness, Arlo’s struggle hasn’t crushed his spirits as he continues to amaze his family and the hospital staff with his giggles and smiles.
Mr Newcombe said: ‘Although we obviously wouldn’t choose this, I can hand-on-heart say we simply couldn’t be without him.
‘He is the bravest boy and despite everything, he smiles – the most incredible smile, at everyone he meets.’
The NHS nurses who care for Arlo are besotted with his cheeky smile and his mother says the love and affection they show for him is astounding.
Ms Newcombe said: ‘Arlo has taught us all so much, about life, appreciation and gratitude,’ The Mirror reported.
Unable to take him home, Arlo’s family strive to provide the best life possible for him at his ward in the Paediatric Intensive Care Unit at King’s College Hospital, in south London.
His parents and brothers Luca, 7, and Sonny, 3, play, read, sing and listen to music with Arlo, and have pizza picnics on the floor.
They also all enjoy movie nights with a laptop at the foot of Arlo’s bed.
His father Mike, 39, has recently quit his job and juggles raising Arlo with his other two sons
Arlo’s condition is so rare his doctors are unsure what the future may hold for him
After Ms Newcombe’s full-term, healthy pregnancy, Arlo’s family family was completely unprepared for the devastating developments when he was born last May.
Within one hour he was struggling to breathe and had to be admitted straight to intensive care.
Arlo was intubated with suspected pneumonia and, after four days at the family’s local hospital, was sent to King’s.
His family endured the agony of weeks of endless tests with no explanation of what was wrong with their little boy.
Two months later, they were told the diagnosis.
Yet, because it is so rare, it raised more questions than answers.
Arlo’s parents and his two brothers frequently visit him in hospital and play at his bedside
Arlo’s doctors were unsure how to treat him, as there are only 200 similar cases documented worldwide and just 12 in the UK.
The illness is also unpredictable as each individual case is different in its genetics and outcomes.
Arlo’s family have been told by doctors they do not know what the prognosis is.
Mr Newcombe, who has recently quit his job at a media company, and his wife juggle caring for their two other sons and spending time with Arlo at hospital, where the pair do shifts keeping him company.
Arlo had a tracheotomy fitted in August and is treated with high dose steroids that leave his immune system permanently compromised.
His family are fundraising to help give Arlo the best life they can, no matter what the future holds.
To donate to Arlo’s GoFundMe page, click here .