Our Family’s Experience with Bone Marrow Transplant Treatment

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…

On Finding Love: Samantha and Nathan

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…

On Finding Love: Nick & Angie

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…

On Finding Love: Donna and Harold

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…

On Finding Love: Kim and Adam

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…

On Finding Love: Dane & Rachel

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…

Introducing the Mini-series: On Finding Love

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…

Allison’s A-List

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…

An event poster inviting all to a meeting with Allstripes, hosted by the Morquio Community.

Past Event: October 23rd, 2021 at 3:00pm ET/ 12:noon PT

Join us and learn more about AllStripes! The Morquio Community is hosting two representatives from AllStripes to answer all your questions, from what is AllStripes, to how do I sign up, to how the platform might be useful to you. Guests: JP De Souza and Rich Elles, of AllStripes Saturday, October 23rd, 2021 at 3:00pm ET/ 12:noon PT on Google Meet. Please register by October 22nd, 2021 here: http://bit.ly/3D4WHP1 The login information for the meeting Read more…

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