Zuleyka Alvarado
Extraordinary Circumstance: Morquio Syndrome
Book: The Permanence of Purple
Words by Dallas Graham
Design & Illustration by Dallas Graham
Photography by Dallas Graham
Editing by Jeri Larsen
Zuleyka Alverado, 12, is a loving, bubbly, sassy young lady who doesn’t let anything get her down. She loves to see everyone around her be happy, and she is a great example of that happiness. At the age of 5, Zuleyka was diagnosed with Morquio syndrome type A, which is part of a group of diseases called mucopolysaccharidosis (MPS). It is a progressive disease, meaning symptoms get worse as a child grows, and Type A--the kind Zuleyka has--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 decrease the pain and reduce the speed of the bone degeneration. With every treatment, she gives hope to others--just as her character Malika /muh-LAY-kuh/--by saving herself and others from what brings them down.
Watch her interviews.
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.
Some images from her workshops.
learn about
Morquio Syndrome
Morquio syndrome A, also known as mucopolysaccharidosis IVA (MPS IVA) is a rare disease caused by a mutation in the GALNS gene. In most people, the GALNS gene has instructions that tell the body to make the GALNS enzyme. This enzyme helps the body break down a substance called keratan sulfate (KS). People with Morquio syndrome A don’t have enough GALNS enzyme to get rid of KS, so KS builds up in their bodies. KS build-up can cause many symptoms, including: hearing/vision loss, a distinct appearance, skeletal problems, movement problems, delayed growth, and organ enlargement. Intellectual abilities usually aren’t affected. These symptoms can lead to complications, which may be life-limiting. Treatment includes enzyme replacement therapy to help break down KS. Many specialists, including surgeons and physical therapists, can also help manage symptoms. If you’d like to learn more about Morquio syndrome A, check out these resources:
rarediseases.org/rare-diseases/morquio-syndrome
mpssociety.org/learn/diseases/mps-iv
morquiosity.com
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.