Now 23, Luke Hains was 8 years old when his younger brother, Levi, was diagnosed with Duchenne muscular dystrophy. Looking after his brother and helping with his daily activities was part of life, even during college. While in the midst of figuring out the trajectory of his career during college, Luke realized that he could use his gained experience as a caregiver and his deep interest in “cells” and rare disease to become a qualified home health aid. Soon after graduating from West Chester University with a major in Biology, Luke met Elliott Johnson.
Luke HainsIt was a great opportunity to help another individual who has Duchenne.
Elliott Johnson, 20, lives with Duchenne muscular dystrophy and leads an active, social and independent life. Living on campus, Elliott spends most of his time in the library studying Audio Music Production at Lebanon Valley College. He wasn’t always sure if it was possible until he met older people with Duchenne during a community event.
“In that meeting, there were a lot of adults with Duchenne pursuing a range of different careers and opportunities, with things like writing a book! It just opened my eyes and made me realize that there are a lot of things that we are capable of doing – more than meets the eye,” says Elliott.
To attend college and pursue his career goals, Elliott needed the help of an aid, which is where Luke comes in. Luke was Elliott’s overnight caretaker during his college experience. The two are not strangers; they are close family friends, which made the experience even more comfortable and easy.
“If I could describe Luke in one word, it would be “patient.” As an example, I use an abductor wedge for sleeping, and I am particular about how it should be positioned. Luke will happily come back four or five times to re-adjust it, when it would drive most people crazy,” says Elliott.
“I don’t know how I would view other disabled people if I didn’t have my brother, because I wouldn’t truly understand what they’re going through,” explains Luke. “I’ve learned that each and every individual is different with their needs and their small tweaks, but they all have similar patterns. It was easy to transfer my skills to Elliott,” says Luke.
The bond between Luke and Elliott has led the two young men to great new paths and careers. After majoring in Cellular and Molecular Biology and caring for Levi and Elliott, Luke has moved on to become a clinical specialist in a health technology company that supports surgeons to navigate spine surgeries.
Elliott is in his final freshman year and exploring what he is physically capable of doing within the Audio Music Production industry and field. There are many different career paths he can pursue, such as audio in video context, sound and production, technical aspects, etc.
Luke praises Elliott for his dedication. “He’s passionate about what he’s doing. He gets up every day, no matter how he’s feeling and he’s just excited to be there, and I think he’s not afraid to advocate for himself, because it’s who he is,” says Luke.
Both men share a positive outlook on life that CAN inspire others with Duchenne. When we ask Luke and Elliott if they have any advice to share, they say:
“Taking care of yourself physically and mentally is the biggest thing. I’ve learned from firsthand experience that if I don’t take care of myself physically and mentally, how am I supposed to help others? Don’t be afraid to reach out, because you’re not alone,” says Luke.
Elliott JohnsonDon’t let what you think your abilities and needs are impact what you want to pursue later in life. There's a lot more that we can do then we may think, especially now with all the advances in technology.