The real baby blues: Two-year-old kept alive by spending 12 hours a day under UV lights to combat rare liver disease
Areesha Shehzad must spend half of every day under lights to keep her aliveShe suffers from rare liver condition affecting just 200 worldwideBlue lights help her body break down chemicals which could otherwise cause fatal brain damage
A brave two-year-old girl suffering from a rare killer liver condition has to stay in a cot under bright blue ultra violet light to keep her alive.
Areesha Shehzad must spend 12 hours a day under the bright blue phototherapy rays in her cot to prevent lethal brain damage.
The toddler, from Bradford, West Yorks, suffers from Crigler-Najjar syndrome, a rare condition affecting less than 200 people worldwide.
Baby blue: Areesha Shehzad lies in her specially-made cot covered in phototherapy blue lights which help keep her alive.
Family support: Areesha, who often has disrupted sleep due to the bright blue lights in her cot, is watched by her brother Subhaan
She is missing a vital enzyme that breaks down and gets rid of a toxic chemical found in red blood cells, and could die if the chemicals are not broken down.
To help her live with the condition, Areesha now spends at least half of every day surrounded by 20 ultra violet blue lights.
Areesha’s condition means she has dangerously high levels of bilrubin, a naturally occuring waste product from the blood usually broken down by an enzyme in the liver.
The UV rays from the blue light affect the bilrubin in Areesha’s system when they come into contact with her red blood cells and skin tissue.
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Areesha needs to be kept under the blue lights for at least 12 hours a day to help her body break down a chemical which could otherwise cause her fatal brain damage
Areesha’s parents say her condition, which only affects less than 200 people in the world, has been emotionally draining on her whole family
Areesha’s Dad Majid, 37, from Bradford, West Yorks, said: ‘It’s a difficult treatment for a two-year-old.
‘She gets very frustrated, and trying to explain to a toddler why we are making her sit in such an uncomfortable environment is so hard.
‘It’s like a prison camp for her – we feel so guilty forcing her to lie down in her cot for so long but we have no choice.’
Areesha’s mum Salma, 25, said: ‘I was so worried when we had the diagnosis and it’s upsetting that we can’t do anything to help her.
Family unit: Areesha on a rare moment allowed away from the blue lights, with father Majid, mother Salma and brother Subhaan
‘We didn’t know much about the disease as it’s so rare and it was an emotional time for the whole family.’
Because she is forced to spend so much time in her room, Areesha has become used to playing alone at night, when the bright blue lights prevent her from sleeping.
Salma gets up to check on Areesha several times a night, and if her daughter is distressed she tries to distract the tot with toys.
Born in October 2009, Areesha was just three days old nurses at Bradford Royal Infirmary noticed there may be something wrong.
They initially thought that Areesha had jaundice, as her skin had developed a yellow tinge, but reassured Salma and Majid that it was nothing to worry about.
After two weeks of phototherapy Areesha was sent home while waiting for test results.
It wasn’t until the couple received an urgent call from the hospital asking to bring Areesha back they began to worry it was more serious.
Areesha had dangerously high levels of a toxin known as bilirubin, a naturally occuring waste product from the blood usually broken down by an enzyme in the liver.
The dangerous levels meant she was forced to stay in hospital for four months while doctors ran further tests and finally diagnosed Crigler- Najjar syndrome type one.
Phototherapy has helped Areesha however the treatment becomes less successful after the age of four, because the skin thickens and blocks the light.
The older little Areesha gets and the bigger her body becomes, the more time she will be forced to spend having the phototherapy, which could be more than 16 hours a day.
This means a liver transplant is likely for the toddler, who is due to under-go preliminary tests next month at Leeds General Infirmary, and Majid is to be tested to see if he is a match.
Fighting to stay alive: The younger will have to be kept under the blue lights until she is old enough to have a liver transplant
Unusual: Areesh’s parents say they hope the blue lights she is subjected to won’t affect what they want to be a ‘normal childhood’
Majid said: ‘It’s very painful for both of us – we obviously don’t want her to miss out on having a normal childhood.
‘We don’t know what will happen when she gets to school age, as she’s so tired during the day.’
Areesha’s liver consultant, Doctor Patricia McClean at Leeds General Infirmary, said: ‘Areesha’s unconjugated bilrubin level has continually increased and is around the 300 mark currently.
‘We would expect a normal level to be between 5 and 20.
‘Anything over 450 means there is a high risk of severe brain damage, and fitting.’
‘I’ve worked here for 20 years, and in this time have seen only a handful of children with Areesha’s condition- around half a dozen cases.
‘Areesha hasn’t shown any signs brain damage, as the phototherapy has ensured her bilirubin levels have been kept below the high risk level, but the family are aware of the risks and are looking into a liver transplant.’