Hi Friends and Neighbors.
My name is Jonah.
I’m 20 months old and live in the white house at the corner of ....
Mommy wanted me to let you know that it’s EB Awareness Week (October 25th-31st). She said I should probably explain what EB is. EB stands for Epidermolysis Bullosa. It’s the skin disorder that I have. EB is a really rare genetic disorder with no cure. We all have proteins that hold our skin together, but I’m missing one (Collagen 17), and that means my skin is really fragile, like a butterfly’s wings. My skin blisters or shears off with any sort of friction or rubbing. I have to stay bandaged from my neck down to protect me. Tags on clothes, seams, regular diapers, a rub of my face with my hand, anything like that can cause my skin to blister or tear. EB also affects my fingernails, hair, and teeth, and in some forms, there can be internal problems, such as blistering and scarring in the esophagus, trachea, or intestines. My biggest risk is getting an infection in one of my wounds, but Mommy and Daddy work hard to keep me safe. I get a bath and my bandages changed every 24 hours.
I was born on February 27, 2009, and Mommy and Daddy had no idea there was going to be a problem. But when I was born, I was in bad shape. I was missing the skin from my elbows down and my knees down, and had other blisters and wounds all over.
My type of EB (Junctional Epidermolysis Bullosa) is recessive, so Mommy and Daddy each have a faulty gene they didn’t know about that they passed on to me. I spent 32 days in the NICU and only about 20% of babies with my type make it to their first birthday. But I’m almost two years old and doing great!
If you’d like to learn more about Epidermolysis Bullosa, please visit http://debra.org (The Dystrophic Epidermolysis Bullosa Research Association) or you can follow my story on my Mommy’s blog, http://patriceandmattwilliams.blogspot.com.
Mommy just wanted you to know me and about my disorder. She and Daddy hope you’ll speak and wave to me when you see me. I’m not contagious, and I’m just about the sweetest thing in the world, according to Mommy anyway. So if you see a little boy with boo boo’s on his face come to your door on Halloween, it’s not part of my costume. It’s just me: beautiful, perfect, just-right Jonah (that was Mommy’s input again).
Thanks for taking the time to read this note. We love our neighborhood and hope to get to meet you soon!
I'm excited about it! Also, if you follow @EBResource on Twitter today and retweet their EB tidbits for the next 24 hours (or really, until 9 am tomorrow... I'm behind), we'll earn $1 for DebRA, for every tweet, up to $2,500. Make sure you include #ebfund in your tweets today because that earns money too! Thanks, Friends.
And please make sure to email me if you plan to attend Friday night's EB Gathering with us and Bella's family. See below post.