Update: Spoke with her mom, she said they prayed and then a miracle happened. They no longer need the procedure. Please prayer that she can heal from the damage done at a previous hospital.
7 years ago when we were blessed with Zack we took him to the local childrens hospital, they were of little help. The best thing that they did for us was give us the name and number of a young adult with EB. I called and talked to her mom and they drove 4 hours the next day with a car full of supplies for us. When they got here they showed me how to do wound care and bath him. They were angels. I was worried about what she would look like, at that point there was very little on the internet about eb and I was not sure what to expect. Well, in walked this beautiful young lady with blonde flowing hair, she was amazing. She was intelligent, fun, and feisty!
She called me today and she is in need of prayers. She needs a procedure done, the local hospital was not able to help her, they did not have small enough instruments. The childrens hospital refused her because of her age (she is in her mid 20's). She has been a life long patient of that childrens hospital, which by they way has been all over the news lately for doing a heart transplant on a man in his 30's. There are a ton of reasons why we travel to Denver childrens hospital for medical care.
Please pray that she can find compasionate doctors willing to listen and help her. Please pray for her Mom, who is having health issues at this time.