Update: Received the diagnosis from test results: William suffers from Dystrophic EB. The good news is that it is debatably not the worst type, where it is considered terminal within the first year. However it is quite severe and the effects can be quite debilitating. Most often patients will live to the age of about 30 years old. He is still in the NICU but they are weening him off of the morphine. His hands and feet are healing a little every day. He maybe heading home in two weeks! At least that is what they are predicting right now.
Here is a link to the description of his type of EB: http://www.debra.org.uk/types-of-eb.html
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