Brianna Minnich, nine, spends up to 12 hours a day under ultra violet lights to help battle the disease, which affects just 200 people in the world.
Her skin and eyes turn yellow whenever she has a sudden change in mood caused by illness, injury, stress or even an argument with her brother Brenden, six.
Her condition is called Crigler-Najjar syndrome.
Brianna, from Pennsylvania, US, has to sleep under a 4ft bank of photo therapy lights over her bed.
Dad Bob said, 29, said: "It's difficult for her social life - having sleepovers at home is hard due to her lights and we have not allowed her to stay at her friends' houses due to not having the lights.
"During the winter months it's even harder since we don't have the bright sun to use as a natural photo therapy light.
"The lights are also very bright and will likely affect her eyes."
Brianna was diagnosed with the disease when she was just two and a half weeks old. As she gets older it's likely she'll need a liver transplant.
But Brianna doesn't let her illness get her down. In fact, one day she hopes to become a famous television star.
Bob said: "She talks every day about becoming famous and one day having her picture in a magazine or being on a hit Disney show. "I tell her each day to never give up faith, that maybe one day she'll get her big break."
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