**Excerpt of post originally written for Allstripes. Link to full article below.** Pretty much my whole life I’ve done arts and crafts — origami, drawing, sewing, painting. My grandfather’s an artist on my mom’s side and my father has a Masters in fine arts, so he always encouraged me to do art. We always made Christmas cards — we made them. All our Halloween costumes too. As a kid, I’d say, I’m bored! And my Read more…
Hello Morquio community! My 8yo son just completed hematopoietic stem cell transplant* (HSCT) to resolve his enzyme deficiency that was brought on by MPS IVA, Morquio Syndrome. This treatment for Morquio was the 2nd treatment of its kind in the US and I wanted to share our story. I wanted to write all of this so that you can better understand our journey and decision making. I stay in contact with the other US HSCT parent Read more…
When you were a teenager, did you have any hesitations or challenges in dating specifically related to having Morquio? How did you navigate these challenges? Social gatherings in and of themselves were difficult to navigate. It was hard to go out and do things like go to the mall and go shopping with my friends, since walking more than a few hundred feet at a time would cause me pain and require me to sit Read more…
When you were single, what was dating like for you? Did you have any hesitations or challenges in dating specifically related to having Morquio? How did you navigate these challenges? Dating was pretty much nonexistent for me. I didn’t have any hesitations, I would call them high hopes, LOL. By the time I was 22 years old, I had had two girlfriends, if you want to call it that, and I had literally told God Read more…
I was born in 1961. When I got old enough to consider dating, opportunities to try to find a date or partner were limited. Disability issues were not discussed much, there was no computer to network with, and certainly there was no information on Morquio. So . . . for me, dating wasn’t given much thought. I wore a back brace in 3rd grade and again in high school. I was in survival mode, getting Read more…
When you were single, what was dating like for you? Did you have any hesitations or challenges in dating specifically related to having Morquio? How did you navigate these challenges? For me, at first dating was a challenge because I didn’t put myself out there. I was still living at home with my parents and hadn’t pushed myself to want more or even get my driver’s license. When I was 24, back in October of Read more…
When Josh and I first met, I was 33 years old. Up until that point, I honestly never thought I would find anyone since no guy had ever shown interest in me before. I had been living on my own for about a year when on March 1, 2010, I received a private message on Facebook from Josh. He told me he was also an LP (he has achondroplasia) and was living in Virginia about Read more…
When you were single, what was dating like for you? Did you have any hesitations or challenges in dating specifically related to having Morquio? How did you navigate these challenges? Dane: Rachel was actually the only person I really dated, when I was 25. Which goes to show it’s never too late to start dating and find your person. I did worry about finding someone who could look past my physical look and lack of Read more…
For this month, around Valentine’s Day, we’ll post a series related to dating and relationships while living with Morquio. This can be a complicated topic raising a whole list of questions: How should I approach dating, and where do I even start? What kind of person should I be looking for? How should I deal with negative interactions with other people that may come up along the way? How would my partner and I navigate issues Read more…
As a person who has lived with Morquio for over 3 decades now, I have given a lot of time and thought to what it means to shape my environment to be as accessible and simple as possible, and I imagine many of you have as well. Morquio can be an exhausting condition to live within and of itself, but having to live, learn, and work in environments that are designed for average height people Read more…
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