Hey Folks! It’s me, Ella. Since my mom is a control freak, I’m pretty new to this whole blogging thing, but I thought I would give it a try.
This week is EB Awareness Week. I know most of you have done your research and know all about EB, but for those of you who are new to this, here’s the basic gist. We all have 2 layers of skin, the epidermis (top layer) and the dermis (bottom layer). Between those 2 layers of skin there is this stuff called Collagen VII protein. It’s like the glue that keeps the 2 layers of skin connected. Because I have EB, I don’t have Collagen VII, so my top layer of skin separates from my bottom layer of skin and either blisters, or just peels off.
Only 20 babies out of 1 million are born with EB, and only about 2 out of those 20 are born with Recessive Dystropic EB (which is what I have). Yep, this means that I’m pretty rare. In fact, for most of you I’m the only person with EB you’ll ever meet!
So, here’s how you can help. For starters, you can keep me and all the other EB kids in your prayers. We all can definitely use them! And you can pray for Debra, that’s the organization that helps families who have kids with EB. You can also pray for the researchers that are working hard to find a cure.
If you’d like to take your help to the next level, you can donate to Debra. When I was born the nice people from Debra sent a big box full of stuff to help me out. My mom cried when she got the box (she’s a crier) because she was so overwhelmed with all the generosity. Debra also has a staff full of very nice people who are willing to help out whenever we need it. Sometimes mommy emails Geri so much that I get embarrassed! (Geri is the nice nurse that helps EB families when they have questions or concerns.) My mommy and daddy support Debra because it not only helps with research for a cure, but also provides family assistance needed today. My mommy says that when I was a baby she was so overwhelmed that she didn’t care to know what research was going to be coming in the next 10 years, mommy and daddy needed help to keep me alive, and Debra provided that help. Debra also organized the conference for EB families that my mommy, Boppie and I went to in June.
If you want to, you can also buy some jewelry that supports EB research. This jewelry company, Satya, has been working with Courtney Cox to develop beautiful jewelry for EB awareness and the proceeds go to EBMRF, an organization that focuses on research for EB. My mommy has the little silver butterfly necklace and matching earrings and she loves them! I think she wears them almost every day! This is killing 2 birds with one stone…you’re donating to EB research AND you get to promote EB awareness by wearing butterflies. How cool is that?
Ok, well Sid the Science Kid is on TV, so I’ll catch ya later. Thanks for all of your prayers and everything you do for my family. We love and appreciate all of you SO much!