In order for Ismail Ali, four years old, to read his comic books and watch his favorite cartoons, he has to sit still for twenty hours a day on his bed surrounded by photo therapy lights. Ismail suffers from Crigler-Najjar disease or lifetime jaundice, which is a very rare liver disease, the Metro reports.
Only 100 people are affected by this disease. Ismail, who’s from Luton, had been spending the all of his life in his specially lit bed. According to Metro, there’s a critical enzyme in his body that’s missing. This enzyme could break down high levels of old or used red blood cells. Without it, a deadly build-up of toxins can occur in his liver.
Shahzia Chaudhari, 43 years old, 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.”
Ismail’s other option for treatment would be a liver transplant, but his parents think that it could potentially kill him due to the family’s history of problematic reactions to anesthetic.
Shahzia 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, displayed signs and symptoms of jaundice as soon as he was born in 2013. Doctors said that was normal for babies to turn like that and would eventually disappear, but Shahzia, who’s a maternity care assistant, knew it was something more serious.
A week after he was born, Ismail just started shaking. When doctors tested his blood, they found an excessive level of bilirubin. Bilirubin is broken down in the lever but since the little boy didn’t have the proper enzyme, all of the biliburin just piled up inside him and made him in the brink of having brain damage or organ failure.
Shahzia said, “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.”
