We often have people ask us what got us so interested in Epidermolysis Bullosa and raising awareness. Do we know someone who has it? Well, we had never heard about it until I (Tiffany) saw a post on Facebook about baby Easton Friedel. It was only a day or two after he was born, just as his story was going viral. The photo will be forever in my heart. It was heartbreaking…seeing this precious newborn, screaming in pain, with no skin on his hands or feet. I immediately sent the link to my husband Kegan at work, asking if we could donate to his family. He felt as strongly, if not stronger about it, than I did.
As the days passed by, we learned of Ben Wiley Jr. Then Brystal Murray. Then Cassie England, Eli Burkhart, Charlie Knuth… The number of EB kids that we were following kept growing, as did our realizations of how awful the disease is, not just physically for the kids, but emotionally and financially for their families. We would see requests for donations on their Facebook pages, then they would seem to get lost in the many posts from the family and people following the child. Kegan is a web developer/designer and felt we should create a website to help the families out. We wanted to make them a page with all of their info and links constantly visible, with donation links that allowed anyone anywhere to donate directly to the family. So, we created EBhelp to do just that!