Neuromuscular Conditions: He Can Beat Them…

Adrian Soto, Writer

A lot of Downey citizens, especially the youth like Downey High School students, have experienced hardships that live long in their memory.  Occasionally, high school students allow their adversity to beat them and to bring them down. However, a great variety of students overcome their adversity and grow leaps and bounds through their unfortunate circumstances.  Brandon Marquez, 12, a student who has been striving to work in the engineering field, overcame neuromuscular condition that greatly limited his physical capabilities.

 

So what is your full name?

 

Marquez: “My full name is Brandon David Marquez.  I am seventeen and I am a senior at Downey High School.”

 

You had mentioned an obstacle you overcame, what was it you overcame?

 

Marquez: “Back when I was in seventh grade, I was diagnosed with a neuromuscular condition that prevented me from speaking, seeing, eating, doing daily tasks (such as putting on my clothes, brushing my teeth, even buttoning my pants).  I was having a lot of trouble even picking up a towel. I had lost a lot of muscle functioning and strength. Prior to actually being diagnosed, I had failing grades because I was unable to perform in school… I couldn’t write, I couldn’t talk.  When I needed to come up and do a presentation, I couldn’t even say my own part. To overcome that, I think it was all, essentially, a mental game. I had to stay strong, at least for myself. This disease, this condition shouldn’t formulate or surround my whole life in a negative way.  I saw that for me to get better, not necessarily physically, but mentally and emotionally in my own self, was to help others with Myasthenia Gravis[what the condition was called].”

 

What did you do to help out others and by extension yourself?

 

Marquez: “I raised over $7,000, and donated it all to the Myasthenia Gravis Foundation and in that I was featured in a newsletter for a scientific journal about my story.  It was similar to what I was doing here, talking to you. After that, I felt better about myself, more confident and I didn’t feel so ashamed or uptight about it.  Now that I am older, I have accepted it [becoming] a part of my life. Even though I have gained most of my functioning, I do have some remnants of it. To overcome, I think you just have to be open and talk about it…owning, accepting what you have for what it is and making something out of it instead of having it tear your whole life apart and bring you down – it makes a depressing life.  That was not what I wanted for myself and now I have become very open about it. If people ask me questions, like you, I have always been open to talking about it, because there needs to be more awareness. It is a snowflake disease, everyone is different when they have it, no two people are the same. For me, I was one of the lucky ones. It also attacked my lungs… so I had my lungs collapse and was sent to the hospital, so that was a scary pivoting moment to overcome.  I changed my life around and made it something better and that is how I overcame it: giving back to people who were just like me, not just with Myasthenia Gravis but also being more accepting of people with other conditions. Handicap people, people with mental disabilities kind of opened my world that there is more out there and everyone has their own conditions; everybody has their own issues, and we all need to be accepting and open. It kind of made me more aware of the world and accepting of the world.”

Marquez’s affliction shifted his entire life around.  He could not function as he fell victim to the disease.  Time and time again he missed school due to his condition, but he continued to handle the disease, eventually “coming to terms with”.  Now, the condition is nowhere near as severe or apparent. Marquez is doing well in his classes and has recently landed a job at the Downey’s Chick-Fil-A.  He enjoys talking about his experiences with his neuromuscular condition, and hopes to build more awareness to Myasthenia Gravis and its foundation in order to help others.