My Grandma Angie made me new Car's jammies and I love them. I know I am going to sleep very good tonight because they are so comfy and because I got a 90% on my AR test on a book that was a 4.2 (fourth grade book). I love it when I get A's on tests.
Hey Zack! Our names are Patrice and Matt Williams, and we just had our baby this past Friday. His name is Jonah, and he has just been diagnosed with EB. He is in the NICU at the hospital and will be for a long time. It will be another two weeks before we know what kind he has, but we just want you to know that we read your blog every day. When everything seems so scary and sad, you are a big hope and inspiration to us. You give us hopes and dreams for Jonah's future, and we are so happy to see you smiling, laughing and playing. We hope so much that Jonah is strong and brave like you, and maybe you can even meet one day! Thanks for being so great! Love, Matt, Patrice, and Jonah
Zack, you're awesome! Do you realize how amazing you are? Kindergarten kids at our school can't even take AR tests. Heck, some of the Kindergarten kids can't even write their name yet. :) You are taking the same AR tests that the kids in Jonathan's class are taking. And you're scoring better than most of those kids. Way to go! So what was the book you read? Maybe Jonathan is reading it too! Love you Handsome!
I didn't really get into a fight with a bear or a t-rex.
Welcome to my blog! Chances are you came to my blog because you asked what happened to me. Well I need to tell you the truth. I did not get into a fight with a bear or a t-rex. I hope you won't be mad at me for not telling the truth to begin with. It is just that I get asked so often that I get bored of telling people why I wear gauze bandages all over my body. When we go shopping we can expect to get asked 2 or 3 times on average. Somedays nobody asks somedays tons of people ask.
I have a rare skin disorder called Epidermolysis Bullosa. I have the recessive dystrophic form, but we like to shorten it and just call it RDEB. I will give you a very simple explanation of it and if you want to know more (which I hope you do) then you can click on some of the links under the "learn more about EB" section.
EB is a genetic skin disorder. I was born with mutations in the Collagen 7 gene. Collagen 7 is one of many proteins that form "hooks" kind of like velcro, the hooks when healthy hold skin to your body. The Collagen 7 hooks are responsible for holding the dermis to the epidermis. Because I don't have them, friction from everyday activities, like running and jumping and playing cause my skin to separate from my body. When skin separates at the dermis/epidermis layer it forms a wound that is similair to a 3rd degree burn. These wounds are deep and cause serious scarring. Collagen 7 hooks, (the real term is fibril) are also needed in your eyes, mouth and digestive tract. Because I don't have them there either, I often have just as many wounds inside as I do outside.
Yes it hurts, yes I wish it would go away, but it does not hold me back. I am so stronge and I am very brave, and I have eb to thank for that.
Hi, I am Zack I am 8! I love playing video games, soccer, t-ball and hanging out with my many friends and cousins. I live with my Dad and Mom, sister Brently and dogs Cinderella and Olivia. I wanted to get my own blog so I could tell people about my EB (Epidermolysis Bullosa). People are always asking what I got into or how I got burned and my Mom and I sometimes don't feel like explaining it. I think it is fun to tell people I got into a fight with a T-Rex or a bear, but it is probably not nice to lie. And besides, I want others to learn about eb, I want them to be able to understand why I look the way I look and that I am just like everyone else.
2 comments:
Hey Zack! Our names are Patrice and Matt Williams, and we just had our baby this past Friday. His name is Jonah, and he has just been diagnosed with EB. He is in the NICU at the hospital and will be for a long time. It will be another two weeks before we know what kind he has, but we just want you to know that we read your blog every day. When everything seems so scary and sad, you are a big hope and inspiration to us. You give us hopes and dreams for Jonah's future, and we are so happy to see you smiling, laughing and playing. We hope so much that Jonah is strong and brave like you, and maybe you can even meet one day! Thanks for being so great!
Love,
Matt, Patrice, and Jonah
Zack, you're awesome! Do you realize how amazing you are? Kindergarten kids at our school can't even take AR tests. Heck, some of the Kindergarten kids can't even write their name yet. :) You are taking the same AR tests that the kids in Jonathan's class are taking. And you're scoring better than most of those kids. Way to go! So what was the book you read? Maybe Jonathan is reading it too!
Love you Handsome!
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