Storyteller: Zuleyka Alvarado
Extraordinary Circumstance: Morquio syndrome
Book: The Permanence of Purple (needs funding)
Words by Dallas Graham
Design & Illustration by Dallas Graham
Photography by Dallas Graham
Edited by Jeri Larsen
ZULEYKA ALVERADO, 12 , is a loving, bubbly, sassy young lady who doesn’t let anything get to her. She loves to see everyone happy. Zuleyka is an inspiring author in the Dallas area. At the age of five, she was diagnosed with Morquio Syndrome type A—a progressive disease, meaning, symptoms get worse as a child ages and is part of a group of diseases called mucopolysaccharidosis (MPS). Type A is painful as it directly impacts the bones, which are continually deteriorating. So, once a week, she spends six hours being *infused* with medication that will help cure the pain and reduce the speed of the bone degeneration. With every treatment, she has set her heart and goal on her soon to be children's book based on an adventurous bird, Malika (muh-LAY-kuh), who gives hope to others! The book she is creating will live with us forever and enrich all of our lives—not just the kids who become first-time authors! This is a long-lasting book for her, her family, and friends to remember her.
Watch her interviews.
Read her book. (In-progress)
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.
Some images from her workshops.
Morquio syndrome is a rare inherited birth defect that is estimated to occur in one of every 200,000 births. The disease may not be visible at birth; symptoms usually begin between ages 1 and 3. Morquio syndrome is a progressive disease, meaning symptoms get worse as a child grows. Morquio syndrome is part of a group of diseases called mucopolysaccharidosis (MPS). Morquio is also known as MPS IV. In children with Morquio syndrome, the body cannot break down sugar chains called glycosaminoglycans that help build bone, cartilage, eye corneas, skin and connective tissue (such as tendons, ligaments, etc.)
People with glycosaminoglycans diseases either do not produce enough of the enzymes needed to break sugar chains into simpler molecules, or they produce enzymes that do not work normally. As a result, glycosaminoglycans collect in cells, blood and connective tissue and cause damage over time. There are two types of Morquio syndrome:
Type A, in which an enzyme called galactosamine-6-sulfatase is missing
Type B, in which there isn’t enough of the enzyme beta-galactosidase