I am part of an EB community on FB and I have learned a TON about EB from that group. There are several families who have adopted their EB children so we have a separate group to support each other. One of the Moms Trisha already has a son with EB and they were in the process of adopting a boy named Seth who also has EB. She flew to meet him for the first time a few weeks ago and well things did not end as they had hoped. Please go read her update and pray for their family. I bawled like a baby reading what happened. I know her family could really use all the love and support they can get right now. HERE is the post.