- This boy is one of the 100 people around the world who suffer from Crigler-Najjar syndrome
- He has to receive blue light on his skin for 20 hours each day
- If not, his bilirubin builds up and he could die
Four-year-old Ismail Ali is an energetic, cheerful and superhero-loving boy, but who must spend 20 hours each day under a bright blue light in order to keep on living.
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.
His family is from Luton in England. Ismail’s mother, Shahzia Chaudhari, says she can see if his bilirubin levels are rising because he becomes lethargic. She comments he “does everything under his lights - he eats, he sleeps, he plays like a normal little boy. The only thing he can't do under there is jump around.”
But he cannot miss his treatment. 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.
This is another dramatic case of Crigler-Najjar syndrome: