Storyteller: Adrian Paz
Extraordinary Circumstance: Spina bifada
Book: The Dino Hunt (completed; needs funding)
Words by Dallas Graham
Design & Illustration by Tamara Oniani
Photography by Michael Sanchez
Edited by Shirley Manning
ADRIAN PAZ will make you laugh and treat you like a friend he has known his entire life, if you get the pleasure of meeting him; and it won’t take you long to recognize his amazing personality. Since he could talk, he talked. You would never know that from birth Adrian faced many medical challenges and would forever be impacted by Spina bifida, because, even with the challenges, he has never let his condition define him. Spina bifida is a birth defect that prevents the spine from connecting in various parts – for Adrian, it is L4 and L5. Because of this, during development, other conditions occur and are found common among those with this diagnosis. At just three-days-old, Adrian went in for his first surgery to close his spine. And since then, he has had a total of nine other surgeries, some small and some big. And he will likely have more in the future. Adrian is also paralyzed from the knee down and uses a wheelchair for mobility. But that would never stop Adrian. Some of Adrian’s hobbies include skiing, baseball, riding his hand cycle, acting, and drawing. He loves dinosaurs above all things, and even has developed a love for Harry Potter. I guess you can say that Adrian is much like any ten-year-old boy, but he does it all under extraordinary circumstances.
Read his book.
Copyright © 2019 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.
Spina bifida is a rare condition named after the Latin term for “split spine.” It’s a birth defect that happens when a structure called the neural tube doesn’t fully close before a child is born. This prevents the backbone (which protects the spinal cord) from properly developing, often leading to spinal cord and nerve damage.
While the lower back is the most common area that spina bifida affects, it can appear in other areas along the spine, too. No one knows exactly what causes it, but genetic and environmental factors may play a role. Risk factors include untreated diabetes, family history, obesity, and certain medications.
There are different types of spina bifida, and symptoms vary widely. These symptoms may include a hairy patch, swelling, dark spot or dimple in the affected area, spinal cord malformations, difficulty walking, learning disability, and more.
There’s no one treatment that can cure spina bifida. Many people with spina bifida receive surgery soon after birth. However, even after surgery, people with more severe cases may need to be watched by a team of medical specialists to look out for possible complications.
If you would like to learn more about spina bifida, here are some other valuable resources:
Red Fred Project would like to thank our friends at Patient Worthy for their research and participation in sharing this very important information with us regarding this extraordinary circumstance. You can learn more about their work at patientyworthy.com.