Red Fred Project

Zack


Zack-Troop_web_bio.jpg

Zack Troop
Extraordinary Circumstance:
Epidermis Bullosa


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Words by Samuel Moesser
Design & Illustration by Jane Okland
Photography by Casey Halliday

Editing by Shirley Manning

 

When Zack Troop was born, it quickly became clear that something was horribly wrong. The Las Vegas, Nevada, hospital was unsure of why he was born with many open wounds, covering most parts of his tiny body. He spent the next nine days in the ICU, enduring tests to understand why his skin was so fragile. When the diagnosis of epidermolysis bullosa was given to his birth family, they felt they could not adequately meet his many special needs. Fast forward seventeen years and across the state line to Utah, where Zack has lived with his forever family since he was fourteen days old. He has endured daily wound care, countless surgeries, and the loss of hand function, due to severe scar tissue. You will also find him to be a very happy and friendly high school student. Zack served as a class officer in seventh and ninth grades. He has received awards for his positive attitude and has spoken on several occasions to large gatherings, sharing his ability to dream big and set and accomplish goals. In his free time, he enjoys biking twenty miles several times a week and playing video games with friends. He looks forward to graduating high school and attending college in the future.


Read his book.

Copyright © 2020 by Dallas Graham. All rights reserved. No part of this book may be reproduced in any form by any electronic or mechanical means, including photocopying, recording, or information storage and retrieval without permission in writing from the copyright holder.


learn more about

Epidermolysis Bullosa

Epidermolysis bullosa (EB) is a group of rare genetic disorders which cause blisters to form on the skin, inside of the mouth, and other surfaces. These blisters appear very easily, even with only gentle rubbing against the skin. There are several different types of EB that are caused by different mutations affecting genes. Kids with EB are sometimes called “Butterfly Children” because of their delicate skin.

EB causes blisters to appear on the skin that can easily break and turn into open wounds that don’t heal on their own. Other symptoms include pain, bleeding, narrowing of the esophagus, and an increased risk of skin cancer. In the most serious cases, EB can be fatal. Some patients may need amputations to prevent lethal infections.

There is an urgent need for more effective EB treatment options, as many patients eventually die from the disease. With no cure, current treatments include pain relief, treating wounds, antibiotics, nutritional support, and measures to prevent complications. An estimated twenty of every million people are born with some form of EB.

Want to learn more about EB? Here are some resources that can help:

www.debra.org/about-eb/eb-depth
www.rarediseases.org/rare-diseases/epidermolysis-bullosa
www.aad.org/public/diseases/a-z/epidermolysis-bullosa-overview

RED FRED PROJECT WOULD LIKE TO THANK OUR FRIENDS AT PATIENT WORTHY FOR THEIR RESEARCH AND PARTICIPATION IN SHARING THIS VERY IMPORTANT INFORMATION REGARDING THIS EXTRAORDINARY CIRCUMSTANCE. YOU CAN LEARN MORE ABOUT THEIR WORK AT PATIENTWORTHY.COM.