Pennsylvania, US – A schoolgirl has to spend up to 12 hours a day under a bright blue ultra violet light to prevent her skin from turning yellow because of a rare liver condition.
Brianna Minnich, 9, spends each night sleeping under UV lights that help battle a rare disease that can sometimes lead to brain damage. Her skin and eyes turn yellow whenever she has a sudden change in mood caused by illness, injury, stress, being bullied at school or even arguing with her brother.
The UV rays from the blue light affect the bilirubin in her system when they come into contact with her red blood cells and skin tissue. By helping to manage bilirubin levels in her body and keep them at an acceptable level, Brianna is saved from any long term damage.
Her father Bob, 29, says: “We were told soon after the diagnosis that she was only the 52nd person in the country to have the disorder, and just the 212th in the world.
“Whenever she is unwell and whenever she has a sudden change in her mood such as getting upset at her brother or if she gets bullied, then her skin tone changes drastically to a much more visible yellow until she calms herself back down.
After being born Brianna underwent tests and was constantly in and out of the hospital for two weeks. She was eventually diagnosed with Crigler-Najjar syndrome at two-and-a-half weeks old, and spent the best part of a month in hospital before being released.
Photo-therapy has helped Brianna but it becomes less successful as she grows up so her dosage of phenobarbital must increase. The daily medication helps jump-start her liver but whenever the dosage is increased it causes her to feel lethargic for weeks and constantly falls asleep at home and school as well as leaving her feeling depressed.
Mr Minnich adds: “It’s difficult for her social life – having sleepovers at home is hard due to her lights, and we have not allowed her stay at her friends house due to not having the lights.
“Long term effects of the lights include having gallstones, so normally a Crigler-Najjar patient eventually has their gallbladder taken out. The lights are also very bright and will likely affect her eyes. The medication she takes is a barbiturate, so taking it for the rest of her life is also going to cause problems.
“Her disorder will never go away, with the exception of getting a liver transplant. There have been talks of an experimental process called gene therapy, but it has been in the testing phase for years due to the lack of funds for research.
“After she was born, my wife and I were both tested for compatibility, and it was determined that I would be a good donor. ‘The process would take a portion of my liver and have it implanted into her body, which will than grow into her.
Brianna loves to sing, play guitar and draw and has also been in multiple plays and dance performances for school. On top of her creative mind she also likes playing softball and riding bikes.”