Spina Bifida Awareness Month – A testimonial from Mark Deschamp

October is Spina Bifida Awareness Month, a time to celebrate hundreds of thousands of people living with Spina Bifida, share anecdotes, promote awareness, and support the community.

According to the Spina Bifida Association, Spina Bifida it’s a type of neural tube defect (NTD) that occurs when a baby’s neural tube fails to develop or close properly. It typically occurs within the first 28 days of pregnancy while the neural tube is forming.

Spina Bifida is commonly referred to as the “snowflake condition”, because no two cases are the same, and the severity of it depends on everything from the size of the opening to the location on the spine.

To commemorate Spina Bifida Awareness Month and bring attention to this condition we want to introduce you to Mark Deschamp, an APEX C user. He was eager to share his experience with his Motion Composites wheelchair and how it has changed his life.

Mark is a super active 45-year-old man who is passionate about volunteering and sports. Mark lives with Spina Bifida and has been in a chair all his life, but he has never let this stop him from being busy all year long and traveling all around throughout the years!

Mark (center) downhill biking with Dave Wolf


Along with Spina Bifida, Mark also has Kyphosis, Scoliosis, and Lordosis in varying degrees that cause him chronic back pain. About 20 years ago, Mark started looking at chairs that would give him the support he needed to help with his back pain. To his surprise, he could only find wheelchairs with heavy suspension options.

"Back then, I didn't care. I was young and just wanted relief. Skip forward 20 years, and I am now feeling the weight, so I started looking at new chair technology, and that’s where Motion Composites with its carbon fiber came into the picture."   

We asked Mark a few more questions about his experience with Motion Composites and how his Apex C wheelchair has impacted his life.

 

Motion Composites: Tell us, Mark, how did Motion Composites impact your life?

Mark Deschamp: As I said, I started looking for new technologies in the wheelchair world, and I became intrigued with carbon fiber, knowing I was due for a new chair soon. With this in mind, and knowing my wheelchair manufacturer representatives in Colorado, I asked them if I could borrow their lightest wheelchair demos to make a side-by-side comparison. I am so glad I did. Some differences were noticeable immediately, and others I only noticed because I was doing the side-by-side comparison.

I knew within just a couple of days of testing I was getting either a Motion Composites Apex Carbon or the Apex Aluminum. Looking back, I am thankful that I was able to get the Apex C, as that was my #1 choice!

It has been a year, and I have noticed I have to put less effort into my pushing. Even with a rigid chair, the bumps get absorbed, but it still feels solid, and I experience minimal back pain. Thankfully, the Apex Carbon wheelchair is super easy to adjust. With my previous chair, I had my dealer make some minor changes after a few weeks/months.

Another thing that I have noticed is when I ride in the car with my parents (they are in their 70s), they can lift my chair in and out of the vehicle easily; this is especially important for me because I also want to be conscious of the weight of my chair for them. We LOVE to travel, and we recently went to Alaska, and within that trip, I had a bus driver comment that my Motion Composites Apex Carbon had to be the lightest chair he had ever lifted into his coach!

MC: Do you have a favorite feature?

MD: My favorite feature has to be the carbon fiber look with the different color accents with rubber grip and the rubber grip OMG, it is a GAME CHANGER for me!! I have big hands; and I often transfer in and out of my chair. The smooth metal with the short downtube of my previous chair was really starting to give me problems trying to smoothly and safely transfer. I thought that at some point, I would end up in the ER, but now my hand fits the width perfectly, and the grip makes me that much more confident that my transfer will be smooth and safe.

Mark in his Apex Carbon visiting a museum

MC: Compared to your prior chair, how does your Motion Composites APEX C differ?

MD: My previous chair was a full A-arm suspension chair that had a smooth ride but was noticeably heavier, and you feel it in your pushing, maneuvers, and loading it in and out of vehicles, etc. Now I feel it even more after being in an MC Apex Carbon!! The difference is astonishing!

MC: Would you recommend Motion Composites to another wheelchair user?

MD: YES, I would totally recommend Motion Composites! I can tell you with certainty that the MC Apex Carbon AND Apex Aluminum are the lightest, most maneuverable, and the most comfortable of them all!  Especially after having tested both the Apex Carbon and Apex Aluminum side-by-side against comparable chairs from other wheelchair manufacturers that claim to have super lightweight wheelchairs.

MC: What do you want to say to other people living with Spina Bifida?

MD: Be active in life and in your community, and do not just stay at home and watch the world go by. You can do so much in this world by working (I am a Sales Rep in Mobility Rehab Equipment Industry) or volunteering (CO Jr. Wheelchair Sports Camp, Spina Bifida Association of CO. Then there is traveling (10 cruises – Caribbean, Mediterranean, Baltic, Alaska, and  4 other European countries by land); and recreation (mountain biking, downhill biking, horseback riding, UTV rides, basketball, skiing, lacrosse, tennis, etc.).

MC: Why do you think educating other people about Spina Bifida is important?

MD: Spina Bifida is the #1 congenital disability in the USA and the world with no known cure. Some doctors are not familiar enough with Spina Bifida TODAY that they are STILL telling parents their kids will never have a high quality of life, so they recommend abortion. If you work with someone with SB, challenge them to push their limits, to be more independent and active.

Mark Deschamps visiting Disney when he was a kid

Mark visiting Mickey Mouse wen he was a kid 

We want to thank Mark Deschamps for the time he took to reply to our questions and share his story with us. We are looking forward to seeing him all around the world traveling with his super cool Apex C wheelchair!

Make sure to visit the Spina Bifida Association website to learn more about this condition and become an ally by helping spread awareness about this condition.

Finally, if you are interested in carbon fiber, do not hesitate to visit our technology page and read our carbon fiber clinical rationale one-pager to learn more about the benefits of this groundbreaking material.

About Motion Composites

Motion Composites has an international reputation as a leader in the design and manufacture of ultralight manual wheelchairs.