Ismail Ali, 4, from Luton, UK, suffers from the rare Crigler-Nayyar syndrome.
This is a congenital hereditary malignant unconjugated hyperbilirubinemia (increased level of bilirubin in the blood), characterized by jaundice and severe damage to the nervous system.
Crigler-Nayyar syndrome occurs in one in a million newborns and is most common in Asia. Ismail Ali must spend 20 hours a day under a bright blue color (phototherapy), which destroys dangerous toxins.
Without these blue rays, the boy would quickly die of jaundice.
Most often, such treatment is carried out for jaundice of newborns:
Irradiation with a powerful source of blue-violet radiation leads to isomerization of bilirubin in the newborn's skin, and thereby facilitates the biotransformation of bilirubin into compounds that the newborn is able to excrete in urine and feces. This reduces the level of bilirubin in the blood and prevents its accumulation in the lipid-rich tissues of the brain and kidneys, which can lead to the development of kernicterus (damage to the central nervous system by bilirubin) or renal failure.
Due to the accumulation of harmful enzymes in the liver, the boy has permanent yellow eyes. Blue rays help break down toxins (lower bilirubin levels), and the only alternative is liver transplant.
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The boy's family even bought a special bed to make it easier for the child to receive blue light phototherapy. The boy has spent most of his life on it since he was a week old and was diagnosed with a rare syndrome.
Liver transplant surgery is quite possible with the donor liver of the child's mother, but 43-year-old Shazia Chodhari herself fears that her son will not survive the operation.