May 6, 2014 Keeping strong


In this week's blog I want to focus on keeping and staying fit. One of the best ways to keep as physically fit is to exercise daily. I'd to emphasize how important it is to do exercises that put no strain on your knees and joints. Such as swimming, using a stationary bike, working out with free weights but no more than 3lbs (doing more reps), and doing Pilates and stretching are among the best ways to keep you strong. All these will give you an overall body workout.

Keeping your weight down is always a good thing. And being in a wheelchair does make it harder but not impossible. Staying active is good for your heart as well as a wonderful benefit to enhance your mood. When those endorphins kick in it creates a sense of wellbeing and you simply feel better.


When using free weights it's always better to use lighter weights such as 3lbs. but to do more reps. Using Pilates bands is really a slow timed stretch. Great for the back and to keep loosened up.


I also use the fit bit clip to be aware of tracking my exercises as well as my food intake and it keeps track of how many steps you take in a day.  It tracks how many calories you burn, and your exercises when you input them into the app that you download for free. The fit bit is around a $100. There is jaw bone up too which is a bit more expensive. I do prefer the fit bit because I find it to be more accurate and easier to use.

The more active and strong you keep yourself the better quality of life you'll enjoy!

Soon we will be uploading a video that Carol and Melissa are working on now. It will be on Pilates at her studio with the machine using modified moves to show how many exercises you can do to stay and keep fit!




Mary Smith





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Questions or Comments:








I wanted to know if anyone would like to share your artwork here on the blog? I think it would be fun!






mary closeup


Blog Entry 3: 4/29/14


Hello there,

So a lot of people seem curious as to how I drive. I've been asked many questions on the  subject so I figured I'd bring it up here.

I got my truck a couple years ago, and it has been by far the coolest purchase I've ever made. Because of my little red truck I've been able to drive myself to work, school, and most importantly go joy riding to the next town with some friends for a concert.

I'll admit it was a process to get this ball rolling. We had debated over trucks vs. vans and almost everything in between. Cars proved to be impractical and vans seemed expensive. So eventually after weeks of searching, my dad and I stumbled across a beautiful cherry red truck. We knew the moment we saw it that that would be the one that worked. So I signed some paperwork and presto, I was the proud owner of a ford ranger.


The only problem was that I've never actually driven before. It seems completely backwards to buy a truck without having ever been behind the wheel, but it seemed the only solution. I needed specialized equipment installed in the truck to drive it, and I can't install all of that without buying something. So I bought it and hoped for the best. I had petal extenders, and for lack of a better word a booster seat built into the driver's seat. Then I had a wheelchair lift installed into the bed of the truck. After I hook my chair into the lift, I can hop into the driver's seat, and operate my backseat robot with a remote. It's a pretty sweet setup. So a few scratches and a speeding ticket later I'm on the road! To be honest it hasn't always worked like a charm, but it does the trick and I wouldn't trade the freedom my truck gives me for anything. 

As always feel free to comment or email me about anything, morquio related or not.
Have a good one,






Blog entry 2: 4/25/14



Hello everyone!
We honestly don't have any earth shattering news to shout about as far as morquio goes, so we thought we'd take this opportunity to check in with you guys. We'd love to have this blog be an interactive and social place for the morquio community to get together and talk about everything and anything. So with that said, how's your week going? What have you been obsessing over lately?
We've added a comment section to the blog, so you can share your thoughts here. Your comment can be public or private if you wish.
Look forward to hearing from you!


Have a good one, and check back next week for a new blog!
Sneak peek for next week's blog:
We'll answer some of the most asked questions





So my wife and I just found out that our son will need surgery on his neck. It's a major procedure and just the thought of it terrifies us. My boy is only can we explain all of this to him? The last thing I want to do is scare him, but I how do you sugar coat that?

I'm just wondering what some other parents have done in this situation... Any guidance would be great.


Thanks- Concerned father


Question: Hi,


My daughter was just recently diagnosed with morquio. We just celebrated her 5th birthday, and next year she's going to start 1st grade. I'm concerned about her and how the other children will look at her. I've debated about going into her class to explain to her classmates and her teacher about her condition, but I'm not sure if I should or not. If anyone has any advice it would be greatly appreciated.




Question: Hi guys!

I'm a 22 year old woman with morquio and I've always wanted to have children. I was just wondering what are the possible risks in carrying a pregnancy to the full term.

Thank you so much!