Just a little update on what has been going on!
Jonathon's appointment went ok the other day. He has some bad scarring in some of his fingers so, that has caused the other fingers to become weak. The doctor gave him some had exercises to do. He has been doing them and they are feeling ok he says. His biggest complaint is the pain!
As most of you know yesterday was National Rare Disease Day!! Jonathon was invited to the State House in Boston to speak about how EB has affected him and what he hopes days like this will do for Rare Diseases. He did such a great job I am so proud of him!! He looked so natural and like it is something he does all the time. The Boston Herald did a awesome article about the event.
