A young boy with a rare medical condition that forced him to spend much of his life under blue lights was back home Wednesday after finally beating his disease.
Maximus McGrath-Daniels, 10, had dreamed of "life without the blue box."
Until now he had never spent a night under the stars; he had never worn pajamas; never snuggled up to his parents in bed; never slept in the dark; and never stayed up late watching television.
For 10 years, his incredibly rare genetic liver disease, Crigler-Najjar syndrome (CNS) type 1, meant he had to spend up to 10 hours a day under blue lights to stay alive.
After two liver transplants -- one of which nearly killed him -- Max has been medically cleared.
He is finally back on his tropical island home -- Thursday Island, off the northeastern tip of Australia -- after nearly two years on the liver transplant waiting list and in specialist care at the Royal Children's Hospital in Brisbane, more than 1,860 miles (3,000km) south.
"It is my dream come true," Max said, adding that he simply wanted to be "the same as the other kids."
His future looks good. Max has not been sick since he arrived home, and the liver graft will grow with him. He is immunosuppressed, needs a daily dose of two tablets, and monthly medical checks will soon become yearly.
"For the first time he is living life as an ordinary little boy," mom Carrie-Anne McGrath said.
Max was one of only five children in Australia who suffered Crigler-Najjar syndrome (CNS) type 1, a genetic liver disease that doctors can control with the use of blue light phototherapy.
It is a rare condition caused by lack of an enzyme that allows a toxic build-up in blood and tissue of bilirubin, the major bile pigment. It is fatal if it reaches the brain.
Lying under a bank of 32 blue lights every night kept Max's bilirubin levels under control, but came with side effects such as egg-yolk-yellow "devil eyes" and an orange skin tint, as well as bleaching his hair blond.
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