Hi,
My daughter Amber was diagnosed with a rare liver disease called Bylers. It took her all this time to find a diagnosis since she was 6 weeks of age. She was finally allowed to have surgery to make her comfortable, but the insurance company denied her because now after 10 months of treatments she is now considered out of network. I would like to talk to anyone who has a child or knows anything specific abpout this disease. Any information would be greatly appreciated.
Thank you,
Sue