Hallie Munro
Extraordinary Circumstance:
Heterotaxy & Primary Ciliary Dyskinesia
Book: The Gems Around Us
Words by Dana Hewitt
Design & Illustrations by Dallas Graham
Photography by Portia Snow
Edited by Shirley Manning
Hallie Munro is a beautiful, vivacious, girl full of spunk and sass. She loves to draw and create. She loves fashion and wants to learn how to sew so that she can create her own designs. She loves to be outdoors and play with her friends. Unfortunately, unlike other kids her age, Hallie spends a good portion of her life at her doctors and in hospitals. She was born with a condition called Heterotaxy, where none of her organs formed correctly or in the right location. This was caused by another rare condition called Primary Ciliary Dyskinesia, which is in the same family as Cystic Fibrosis. She has many complex birth defects that leave her fighting for her life. It takes a large team to keep Hallie’s body working. She sees GI, nephrology, hematology, urology, orthopedics, neurology, neurosurgery, cardiology, pulmonology, rheumatology, immunology, surgery, psychiatry, and palliative specialists. Keeping up with Hallie and all of her medical appointments is more than a full-time job. She attempts to live as normal of a life as possible, but misses about 60 days of school a year.
Read her 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
Heterotaxy & Primary Ciliary Dyskinesia
Heterotaxy is a birth defect where internal organs form in an unusual arrangement. For example, some organs that are usually on the left might be on the right—although unlike the condition situs inversus, where organ arrangement is entirely flipped, Heterotaxy often leads to serious health problems. Heterotaxy can change the structure of the heart, lungs, blood vessels, as well as other organs. Symptoms and treatment vary, depending on what parts of the body are affected. Some people with Heterotaxy also have PCD. Primary ciliary dyskinesia (PCD) is a rare disorder passed down in families. The disorder affects moving cilia. Cilia are small, hairlike structures in cells that help keep the ears, nose, and airways healthy. People with PCD have respiratory infections when they’re younger, which leads to more serious lung, ear, and sinus diseases later on. It’s easier to treat PCD when it’s diagnosed early. If you would like to learn more about Heterotaxy and PCD, here are some other valuable resources:
www.heterotaxyconnection.org
www.pcdfoundation.org
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.