February 28 is Rare Disease Day. Throughout the month—in recognition of our Redefining Rare initiative — we will be posting stories about SMA community members, showcasing their greatest passions, hobbies and tidbits of their life.
Kelsey Roberts is a determined, kind, and passionate 18-year-old from Massachusetts. As a teenager, she was diagnosed with spinal muscular atrophy (SMA). SMA is nowhere in the conversation as she talks about going to the beach, traveling, and watching TV shows with her sister. “I’m fun-loving, adventurous, and enjoy a good laugh,” Kelsey shares.
Kelsey first got involved with Cure SMA at the 2018 New England Walk-n-Roll. “One of the activities they had for walkers was face painting, and my friend suggested that we all get a purple ribbon painted onto our cheeks. From thereon, it became a tradition among my friends and I to all get a purple ribbon painted onto our faces.” But one of Kelsey’s biggest passions is reading.
Even though Kelsey is an avid reader now, it took some time for her passion to surface. “I would say that my interest in stories started when I was old enough to understand what my parents were reading to me. However, I had a learning disability, so I didn’t really begin to love reading until I was 10 years old,” she shares.
A few months into her COVID-19 quarantine in 2020, Kelsey decided to create a book Instagram account to share her favorite books, what she is currently reading, and connect with other individuals who have the same enthusiasm for reading that she does. “I needed something to do with my time and after seeing so many beautiful Instagram accounts, I decided to try it out for myself.” Kelsey continues, “I believe it’s important to share your passions with others. It can make for long-lasting friendships with others who have common interests.”
Through her Instagram account, Kelsey hopes to raise awareness about SMA, but more importantly connect with others. “Through reading, I can connect with people who also have SMA. It can be hard to deal with my SMA some days but having a friend who understands your struggles makes a world of a difference.” Kelsey hopes all people will see her account as a safe space they can come to. “To be honest, I haven’t read any books that have had great disability representation, which is very disheartening,” says Kelsey.
Kelsey understands first-hand how difficult it can be to make a habit out of reading. Her advice is to just keep going. “Not everyone likes the same books, so it’s good to venture into other genres to find what you like best.” Her biggest tip is to listen to audiobooks! “Audiobooks are a great way to enjoy great stories while you’re doing other things,” she said.
Kelsey is currently reading Heartstopper by Alice Oseman. Her top three favorite books (at least as of today) are A Court of Mist and Fury by Sarah J. Maas, The Poet X by Elizabeth Acevedo, and A Kingdom of Flesh and Fire by Jennifer L. Armentrout. Follow along with Kelsey on Instagram.