‘I asked my parents, ‘Why am I not like all the other kids?’ to which they replied, ‘That’s just how God made you.’: Young woman with Spinal Muscular Atrophy pursues career, ‘I found a way to make life happen!’

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“As a young child, I would often ask my parents, ‘Why am I not like all the other kids?’ to which they would reply, ‘That’s just how God made you.’ I didn’t understand at the time, but the tiny bit of envy I felt toward physically able-bodied children was brushed aside. I would just nod and smile. I didn’t want to make my parents feel sad or guilty about my circumstances.

When I was a baby, my parents noticed I wasn’t meeting important childhood milestones. I couldn’t crawl, I didn’t attempt to stand independently, and I never did walk. Concerned there was something wrong, my parents took me from doctor to doctor with more questions than answers arising. It wasn’t until I was sent to a neurologist that I was diagnosed with Spinal Muscular Atrophy (SMA) Type 2. SMA is a neuromuscular disease that causes my body to gradually lose motor function and makes me physically reliant on help from others. Since I wasn’t able to walk, I learned how to operate a power wheelchair when I was 3 years old. To me, that was normal and I didn’t feel any different.

Courtesy of Janelle Fiesta

Growing up as an elementary school kid was simple — I got along with my classmates, made friends and the wheelchair got me good attention because it fascinated the other children. I was aware of my physical disability and limitations, and it didn’t really bother me. Since my muscles were weak, I would sit on the sidelines during PE, while my peers would play and have the time of their lives. Part of me wished I could also run and play beside them, but I just shook that feeling off. Instead, I had a clipboard and a piece of scratch paper on my lap, and a pencil in my hand. I could still write, which meant I could also draw. And because it was something I could do, I honed into it, drawing my own cartoons that made me happy.

I religiously watched Disney movies with my siblings. I still remember the moment when I first watched a life-changing scene in Beauty and the Beast, where the Beast and Belle danced in the enormous ballroom while Mrs. Potts sang. The camera spun around the two, creating such a heartwarming, beautiful and magical moment. I was still a happy-go-lucky little kid, but I told myself when I grew up, I would create art in the films. I wanted to be a part of that magic. I became more grounded once middle school came around, but going to a new school in a different district was tough. I was that awkward girl in a wheelchair who didn’t know anybody. I didn’t fit in, and I wasn’t sure how to be myself in fear of being judged or ostracized. I ended up choosing to recede into my shell. I played the part of a shy, quiet, and agreeable girl with a disability. Looking back, I wish I allowed myself to just do me, but we all figure out our place in this world through trial and error.

My favorite class in middle school was Drawing and Painting. It was there I met a small group of like-minded friends, who also enjoyed creating art. When I had a paper in front of me and an idea in my mind, I felt like I was no different than any other person in my art class. I wasn’t talented in the slightest and my arm would sometimes get worn out from the movement, but it was fun and it was something I could do, so I stuck to it.

Courtesy of Janelle Fiesta

In the 8th grade, I got terribly sick with sepsis and landed in the hospital for a couple of weeks. I was hooked up to machines, bedridden, and in so much pain. During my stay at the hospital, my family gave me a portable DVD player to help pass the time. The hospital I was at had a playroom filled with a collection of DVDs patients could borrow, so I took advantage of this and ended up binge-watching Disney, Pixar, and Dreamworks movies I never watched before. In a difficult and uncertain period in my life, these animated films made me feel happy and inspired. Despite how hopeless and hurt I felt at the time, these movies filled with lively characters, intriguing stories, and magical moments reminded me of my dream from my childhood. This time, my dream took on a more solidified form. I wanted to be a Disney animator and be a part of the magic — to help create animated films that would make others feel inspired, despite what they may be going through in their lives. When my health improved, I left the hospital excited and hopeful for my future dream.

Courtesy of Janelle Fiesta

Entering high school was no different. I already established myself in middle school, so I carried out the same persona and got by comfortably enough. Of course, I took more art classes, even enrolling in a digital print class. This is where I was first introduced to the art program Adobe Photoshop. I was terrible at drawing digitally, so I shelved it for a few years. I originally wanted to go to college at an art school, but a huge factor that stopped me from pursuing this goal was my SMA. I believed it was unrealistic for me to take a huge leap, especially with no plan in mind as to who would help care for me, where would I live, and if I was physically capable of relocating without it affecting my health. I decided it was best for me to attend my local community college and figure out what I would like to do in the meantime, and that’s exactly what I did. I entered a digital media program, where I studied the basics of 3D character animation, digital illustration, and graphic design. I made many friends in my cohort, and I felt like I found a place where I could truly be myself.

Courtesy of Janelle Fiesta

In college, my dream took an unexpected shift in a different direction. I learned a lot about the basics of animating and ironically enough, I also learned I didn’t enjoy animating at all. Although I had a deep appreciation for the art form, I knew I couldn’t see myself doing this as a career — it just wasn’t for me. My other classes revolved around digital illustration, and although I had a rocky beginning learning how to use Adobe Photoshop (again) and Adobe Illustrator, I found myself loving my digital illustration classes the most. I graduated with my Associate’s Degree in Digital Media in 2016. My dream to be a Disney animator was scrapped and I had no idea what to do next. Now what?

Courtesy of Janelle Fiesta

I spent my post-college time searching for a job related to graphic design and digital illustration. I went from job interview to job interview, optimistic I could prove I had a lot to offer. However, I was never able to land a job. Months of job hunting got tiring and depressing, and I felt the hopeless dread of searching for an art job or returning to college because I was certain I wasn’t good enough. This went on for almost a year and I felt so unfulfilled and empty.

In 2017, a good art friend from college reached out to me, asking if I would be interested in an opportunity to sell my artwork at an upcoming anime/pop-culture event. I never thought of selling my art before, so the idea sounded so absurd. However, out of desperation and hope for a new direction, I agreed to her offer, and I had just a few months to come up with artwork to sell. I had no idea what I was doing. What had I gotten myself into? I dropped job hunting and started putting my heart and soul into figuring out what to sell. I loved drawing cute cartoons, so I used the skills that I learned in college to create several designs. With the help of my boyfriend (best friend at the time), Antoine, we managed to come up with several items for the event: stickers, T-shirts, and bookmarks. The whole process was stressful but extremely exciting, silly, and fun. I had a glimpse of hope, and it was enough to bring me somewhere.

On the day of the event, I told myself no matter what happened, I would be proud of myself and keep moving forward. I was so nervous and excited. The day of the event came and went, and that night after reflecting on how successful the event had gone, I discovered a new way to re-spark my old dream. I wanted to share my artwork with others — to make people happy, laugh, and smile with my cute cartoons. To do this, I started my own art business in September 2019, Cute Loot Arts. It took me two years to finally commit to this dream; I had other things to address first.

Courtesy of Janelle Fiesta

In 2018, I started feeling the effects of my SMA catching up to me. I felt my left hand struggling to open and I was reminded of my condition, and how although I was still strong enough, I was losing muscle function as the days passed. This thought made me afraid and anxious about the future. I couldn’t imagine losing control over my body, especially my hands and arms — the parts of my body that allowed me to create my art.

Courtesy of Janelle Fiesta

This realization took me back to 2016 when I learned about Spinraza, a recent FDA approved and brand new medication on the market used for treating people living with SMA. I never expected to see a treatment for my condition in my lifetime. It took me by surprise, and I didn’t know what to make of this news. The uncertainty around change I couldn’t wrap my head around was enough for me to pass on this treatment.

But in 2018, my doctor encouraged me to consider treatment for SMA. With a sense of renewed purpose and hopes for the future, I reversed my decision I had made in 2016. I wanted to embark on my Spinraza journey so I could be strong and healthy enough to be able to carry out my dreams for the future. I took a leap of faith and moved forward with starting the lengthy process of getting approved for Spinraza. It took a lot of time, effort, and communication, but it was well worth it. In the summer of 2019, I was given approval, and I started treatment in October 2019.

Courtesy of Janelle Fiesta

It’s been almost a year since. Every 4 months, I go to the hospital, undergo a procedure known as a spinal tap, and get the medication injected directly into my spine. It can be painful, and some procedure days are better than others, but I’m grateful and blessed I’m undergoing treatment that can help stop the progression of my SMA. I have seen slight improvements in the muscle strength of my arms and hands. Although it cannot reverse the damages caused by my SMA, I’m happy it will allow me to maintain my strength and continue doing things I’m passionate about, like my art.

It’s now 2020 and it’s been an extremely interesting year, to say the least. If there’s one thing I want to share based on my life experiences, it’s life never goes as planned, even when you wish it would. I didn’t become an animator. However, I became an entrepreneur — I create my own art and run my art business. I get to meet and connect with wonderful people through what I do. It can be stressful at times because I’m learning as I go, but there’s nothing I would rather do than what I’m doing now. If I had the choice, I wouldn’t change my circumstances. I love how things are unfolding for me and despite living with SMA, I found a way to make life happen.”

Courtesy of Janelle Fiesta

This story was submitted to Love What Matters by Janelle Fiesta. You can follow their journey on Instagram and her website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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