PHACE

I found out yesterday that my baby nephew Henry has something called PHACE syndrome. It is a very rare disease and there are less than 1,000 people worldwide who have been diagnosed. It started with a red splotch on his forehead that spread to his right eyelid. It was diagnosed as a hemangioma and an MRI showed that he has an enlarged artery in his brain. Right now he only has a mild case and meets only two of the five criteria. It is just imperative a neurologist treats the brain issue and an ophthalmologist monitors his eyesight. I was really worried last night but I'm praying about his treatment. His doctor is positive his outlook is good. I will update!