A young boy diagnosed with an incredibly rare liver disease spends 20 hours a day under bright blue lights designed to keep him alive.
Ismail Ali, four, is one of just 100 people in the world who suffers from Crigler-Najjar syndrome, also called "lifetime jaundice".
His body is missing an enzyme which breaks down high levels of old or worn out red blood cells, putting him at risk of a potentially fatal build-up of toxins in his liver.
To break down the toxins he spends 20 hours a day on a bed powered by photo therapy lights - where he eats, sleeps and plays.
Ismail has been receiving photo therapy treatment for the inherited disorder since he was just a week old.
His mother Shahzia Chaudhari, 43, said: "Ismail does everything under his lights - he eats, he sleeps, he plays like a normal little boy.
"He has no choice because if we let the toxins build up he could suffer brain damage and potentially he could die.
"We've had to completely adapt as a family. We can't go out for meals, we can't go to weddings, we have to be close to Ismail's bed at all times.
"But we love him to bits and we wouldn't change him for the world."
The only other treatment available to Ismail would be a liver transplant but Shahzia and her teaching assistant husband Shazab Ali, 48, fear it would kill him.
The family has a history of adverse reactions to anaesthetic, so he may not even survive being put to sleep.
The couple's daughter Saima, 18, had to be placed on life support and almost died after undergoing a biopsy as a baby when she wasn't eating or gaining weight.
It led to doctors testing the whole family to find they are allergic to medication commonly used when putting people to sleep.
Although they carry cards to say they cannot be given suxamethonium or mivacurium, Shahzia doesn't want to risk him being administered a drug which could kill him if he underwent a liver transplant.
She said: "If Ismail decides to take the risk and have a liver transplant at a later date, that's a decision we will support him with.
"We just want to give him the best that we can for now and allow him to have the best childhood possible."
Ismail, who has four older sisters, started showing symptoms of jaundice shortly after he was born in 2013.
Doctors dismissed it as completely normal, thinking it would soon pass, but maternity care assistant Shahzia had an instinct it was more serious.
A week later he began to shake, prompting medics to carry out tests on Ismail's blood - to find he had an excessive level of bilrubin.
Normally bilrubin is broken down by the liver but Ismail lacks the enzyme that does this for him, leaving him at risk of death, suffer brain damage or slow organ failure.
As a result, he requires regular phototherapy to control his symptoms which was initially administered in hospital via specialist machines.
The light is created from the blue colours of the light spectrum and is shone onto the skin, adding oxygen to the bilirubin so it dissolves easily in water and makes it easier for the liver to break down.
To keep Ismail alive, the family made the decision to have a specialist bed fitted at their home in Luton, Bedfordshire, which can be used to keep his levels stable.
Ismail is the only child in the UK to have the specialist kit, which was built by an engineer in Halifax, West Yorkshire, and paid for by the NHS .
The lights have to be changed every six months as they are only efficient enough to provide proper treatment for 1,000 hours at a time.
Shahzia said: "It's a frame made of tubes with a mesh-like material around it. The lights inside go up to 40 degrees celsius but we can turn the temperature up and down depending on how he is feeling.
"Ismail spends 20 hours a day under the lights. The only thing he can't do under there is jump around. The first thing he does when he comes out is go and jump on our bed, he's like a little tornado.
"It was hard to keep him under there at first but he's come to learn that he has to be under there to keep him healthy.
"If his levels get too high, he has to be taken into hospital and he doesn't want that."
The phototherapy keeps Ismail's bilrubin levels consistent but Shahzia can spot when his levels are on the rise as Ismail's eyes become yellow and he gets very lethargic.
As a result of his treatment, Ismail is only able to go to school for two hours at a time, and only when he is well enough.
The family are now on the waiting list for a specialist "Billy Bed" which is only available in the Netherlands.
It provides a more intense dose of phototherapy as the lights are more efficient, and it's thought Ismail will only have to spent up to seven hours a night undergoing treatment.
The NHS have agreed to fund the bed and hope it will be delivered to them later this year.
Shahzia added: "If we can get this piece of equipment, Ismail could just be in there overnight.
"It would give him some normality and allow him to be like every other child."
The family are fundraising to try and raise funds for a carer and specialist room for Ismail.