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Read stories and support others who have been affected by Morquio A. You can write blog posts and create an online journal.

I am just leaning how get back on here today so looking around.

We received results on my dad today and he is Morquio A. He is 80 years old (almost 81) and believe he is the oldest living person with MPS IV.

I haven’t introduce myself on my first post. I am Jocelyn Wong from Woodbridge, NJ. I was diagnosed Morquio Syndrome type A at age 5 in Hong Kong. As technology was not as convenient as today, my family had limitations on learning more about Morquio Syndrome. Morquio was never allowed to be an obstacle for me. My parents sent me to study in the United States after I graduated elementary school in Hong Kong and I earned my art degree in 2007. I have lived here in the US ever since. After my college graduation, I attend MPS conferences in the US and also around the world. I quickly realized that many countries still lack knowledge of MPS due to technology limitations, language barriers and lack of rare disease awareness within medical communities. I began volunteering with the Asia MPS community and helped to establish China MPS Rare Disease Center in 2012.

My daughter has had plates and screws placed in top and bottom of both knees 3 years ago. After a year, top set came out after great results in straightening her knock knees. Now her knees are getting bad again… Surgeon just recommended more extensive leg straightening surgery. We’re pretty nervous about this one.

Hi, I’m Nick Gaudin, a 37 y/o Morquio male patient. I was diagnosed at 2 y/o because of slouching in photographs that my parents saw. My geneticist at the time gave my parents a book of worst case scenarios and told them to prepare for death before 20. That was long ago, and Morquio is only a small part of my life. As a child, I walked, ran, played baseball and rode bikes until the age of 15. I began using crutches and got my driver’s license. I graduated high school in 96 and quickly began working for a trucking company. While working for this company, I was part of a rock band that toured the Southeast for 4 yrs. After 18 yrs at the trucking company, I filed for disability and was denied because I was deemed “not handicap enough”. I filed again and got it. Now, I am able to enjoy watching my kids grow (14 y/o stepdaughter that I’ve raised since she was 1 and 7 y/o biological son, who are both healthy). I am also able to help my wife in many ways. I am a Morquio Advocate.

When a parent hears the word Morquio they often think of a short life filled with heartache and many obstacles. When I hear Morquio, I think that I have been given one of the greatest gifts of all, along with a chance to beat overwhelming odds and experience life in a way that an average person may not. Morquio will not define you—YOU will define Morquio. I’ve always lived my life with one thing in mind: I have to make this world work for me and you don’t always have to “push through things” like people so often say. If you cannot “push through,” “find away around it.” Currently, I do computer billing along with other office tasks at a truck equipment company, but I’m working towards a lifelong dream of motivational speaking. Through this site it is my hope that I may be able to help put an end to the heartache and fear parents of a child with Morquio may face. My parents experienced this alone with no guidance over 30 years ago and, with the technology available, no one should have to experience this again. Some other things you should know about me: I enjoy spending time with my family no matter what the occasion may be. I’m a music junkie. In fact, I was part of a traveling rock band. I also enjoy watching MMA. My happiest moments have been the days I met my wife and daughter, and the day my son was born.

Bella enjoys doing crafts – such as painting, beading, and anything with duct tape. She likes playing Wii and on her iPad. Bella also enjoys playing with her dogs and horse. Bella loves spending time with her big sister Gabi! They have fun exploring and researching trips they would love to take. Bella’s happiest day was the day we brought home our mini horse Mattie! Mattie was small enough to fit in the back of the van. Bella says people would be surprised by how many surgeries she has had. She has had 9 major surgeries and a couple day surgeries. I think people would be surprised at how she stays happy and smiling even during the toughest times when I want to break down and cry—she is still happy and smiling! – Submitted by Rachel Burton, mother of Isabella Burton age 8 with Morquio A

I’ve worked in Human Resources as a data entry person and have done general administrative work, but most of my career has been as a Production/Planner Scheduler for manufacturing companies. Mostly Pharmaceutical, but have also worked for Medical Device and Military Aircraft Escape Systems. I was filled with a sense of joy and belonging when I joined Little People of America. It was at a time when I was looking for someone to talk with. Becoming an active member also led me to meeting my phenomenal husband. We really enjoy getting together with friends for dinner, traveling around the Bay Area to places we haven’t explored, art/wine shows, going the movies, board games, the Annual Crab feed on the coast, and gardening.

Dane is very active. He is attending college, working part-time, and is involved as a Core Leader with the Life Teen Group at our church. Dane drives and is living independently in a small house my husband and I renovated for him, in which everything is to his height (the counters, the stove, the sink, light switches, etc). I am very proud of Dane for all that he has accomplished and for how he lives his life. Dane absolutely loves working on computers and is very good at it. I love having my own “IT Guy” living right next to me to fix all of my computer problems. He has built two of his own computers already. Many of our friends and family call him when they have a computer problem and pay him to fix their problems also. Dane is working Part-time at St. Cecilia School as their IT Guy, fixing, troubleshooting, and maintaining their computer system. He is also going to college to get a Bachelor’s Degree in Informatics—System Administration, which of course, deals with computers. My happiest moments are the times in which Dane has accomplished things like getting his Eagle Scout, Being Awarded major awards like the Young Hero Award of the State of Louisiana, getting his driver’s license, any accomplishments that he has acquired that have made him an inspiration to so many people. Some of my proudest moments have been when Dane has gone through major surgeries, and he does not complain or have a negative attitude toward life but embraces those moments and accepts those moments as gifts from God. I keep close to my heart all of the 21 hour drives to Delaware and 21 hour drives back home, bringing Dane home in casts and/or halos. He never complained but was a trooper. Each time we arrived back home with Dane, so many of our family and friends would be waiting at home for him with a huge welcome, his dad usually had a big pot of gumbo waiting for him, which is his favorite food. Despite Morquio being the severe disease that it is, Dane and our family have embraced it and turned it into a positive tribulation that others can see that with our faith all things are possible with God. We have been so blessed to have a family and community of friends that love our family and have been with us to support us every step of the way through Dane’s Morquio disease. We know we can continue to count on them through joys, through sorrow, through hard times, and through good times. God has blessed us completely. Amen. – Submitted by Joni, mother of Dane

When Annabelle crawled into my car after picking her up from 1st grade, she threw her fist in the air and announced “Mom, I am a power ranger! And Power Rangers never give up! Right, mom?” My heart smiled. All in one statement, she exuded confidence and happiness. She stated that she was strong and she had the stamina to endure all challenges put before her. And then she ended it with that endearing question….”Right, Mom?” You bet! I don’t know power rangers but I certainly can appreciate the “never give up” motto. She is a hero in my eyes in not only for the obvious reasons but also in the ways that her diagnosis has changed the course of our lives to become stronger, wiser, kinder, more gracious, and much more grateful for what we do have. Annabelle was diagnosed with Morquio A at 6 months old. She is our first born and my husband and I doted on her every single minute. I was in complete awe at the experience of being a mom of such a precious baby. After I noticed a strange curve in her lower back, our world turned completely upside down. We learned that she had a very serious illness that would most likely cause her great pain and discomfort. It would mean endless doctor appointments, surgeries, as often as, most kids just get well-checkup visits. With each appointment, we would brace ourselves for possible more devastating news about the disease progression and what it might mean for her future. As her mother, there have been many moments that I have choked back tears and looked into her scared, anxious eyes with a big smile and said “Darling, you are going to be just fine. We will get through this together.” She has been through some tough stuff and she has learned to be courageous and strong. She has learned to stand up for herself and feel confident. She is bright, vivacious, with a contagious laugh. There are still days that she dreams about being “tall” or about having MPS is “very bad and makes me mad”. But we always finish those conversations with talking about how being small is special too and it is all about what is in your heart and how you decide to live your life. The rest of it is just our challenge and we will get through it together. Annabelle is my super hero power ranger. Certainly no “I’m a princess” talk from her…she very much prefers to be a lion that RRRROARS really loud! Or she might be the Knight that saves the princess from evil with her magic sword. It is music to my ears to hear how excited she is about life and that she has the stamina to take on the tough stuff. As a mom of child with Morquio, I appreciate these small wonderful moments between appointments and surgeries when she gets to be just-a-kid with big ideas and wild dreams. She is a gift to my life, our, family, our community, our world. I could not be prouder of my courageous Annabelle, the Power Ranger/ Lion/Knight. I close this note as I hear her rrrroaring in the distance for a little attention. so appropriate!

Morquio may not be the word that is commonly used, but it is the word that I know since I was little. When people first heard Morquio, “short” may be the word that comes out of their mind, but it never bothers me. Actually I enjoy being short. The advantage of being short is getting help from others easily. Most of the time, I don’t even need to ask, people would come to help me especially in shopping. There are countless times that the clerk told me to get junior ticket instead of general admission in most theme parks and travel spots. I never need to worry about leg space while traveling especially on the plane. Morquio does limit me sometimes but at the same time, it has made my life more colorful. It gives me a lot of chance and life experiences that others may not have. It also gives me a lot of opportunities to travel around the world, meet and get to know other families with MPS and related diseases. I feel grateful to have Morquio because it made me more unique in the world.

I am a mother of daughter (Tibian) she is an 11 year old and has Morquio A … the diagnosis in 2009… now she is in sixth grade.

I work for The City of Oklahoma City in the Utility Customer Service Department. Basically, when someone has a problem with their water and trash bill or service, they call me. No one is ever happy to talk to me, lol! I was diagnosed with Morquio A when I was 6 after I was misdiagnosed several times. I had 1 leg straightening surgery when I was 9 and tubes put in my ears twice. I guess I am pretty lucky in that regard, I haven’t had to go through as many procedures as most. I have 2 younger sisters and I am the only little person in my family. My youngest sister teaches 7th grade science and always has me come and talk to her classes at the beginning of her genetics sessions. I have a lot of fun doing that!

I am the Aunt of two young girls under the age of 6 that have Morquio A.

My diagnosis came when I was 4 1/2. I started walking, and that’s when the doctor realized there was a problem, at first they thought it was an orthopedic issue and I had braces for a while. It took many visits to various doctors before one suggested Morquios. A geneticist made the official diagnosis. As a child I was involved in all of his research projects. I wasn’t very aware that I was different from my friends until third grade when I couldn’t keep up with them. But I had good friends and they accepted me no matter what. Currently, I am the Ticket to Work program manager for a private company in the Orlando area. If I can make a small difference in someone’s life it’s a good day. I love spending time with family and friends and doing some volunteer work. My service dog, Murphy, is my best friend and constant companion, he has made a huge difference in my live and he brings a smile to the face of all who meet him.

I was 2 and a half years old when the doctors discovered I had morquio syndrome. I am a part time student who is majoring in business international. During my free time I like to play with my little sister…and I also like to listen to music all the time I sometimes grab my guitar and play or just play with the drums.

I was diagnosed with Morquio type A at 18 months. As my parents would say the doctors didn’t print a pretty picture of my future. I shock my parents everyday of the person I am. I’m very outgoing and I never let my disability stop me from what I want to do. I hang out with my friends, I was a varsity cheerleader for 3 years, and it doesn’t stop there. I’m also going to a local community college next year and hope to do cheerleading again.

My math teacher’s son has a son that has morquio He was about 2.5 when he was diagnosed with morquio. He is a very inspiring person I did a school fundraiser for morquio and we raised about 2,500 dollars.

I have my two babies with Morquio syndrome a boy, 13 and his sister, 11! It’s been hard but we have managed to be where we are now!

I was diagnosed with Morquio A at 2 and a half years old, I have had 8 surgeries since I was 4, I am now 17. I love reading, writing, and I do a lot of public speaking, including to the FDA and the World Genetics conference in San Diego in February 2014!