He was born with a rare disease called Crigler-Najjar syndrome, in which the body is unable to break down old red blood cells, leading to toxin build-up in his liver. This causes high levels of bilirubin in the blood, and it can be potentially life-threatening. The blue light helps Ismail break down those toxins, and he has a special bed powered by phototherapy, where he sleeps, eats and plays. Only around 100 people in the world are affected by this disease.
While it does not have a cure yet, Ismail’s family is hoping to gather the necessary funds to buy a new bed, made in the Netherlands with cutting-edge technology, which will permit the boy to only need seven hours of blue light.
This will allow greater freedom for him to go outside and attend school normally. Right now, he only goes about two and a half hours, if he feels well. The only other alternative is to receive a liver transplant, but his family is afraid this could cause him to die.
They all suffer from allergy to most anesthetics, which is an additional problem he would have to deal with.
If toxins build up excessively, Ismail could suffer brain damage and die. “We've had to completely adapt as a family. We can't go out for meals, we can't go to weddings. But we love him to bits and we wouldn't change him for the world” Chaudhari affirms
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