Marley was diagnosed with spinal muscular atrophy (SMA) Type II at eighteen months old. “SMA basically means that my muscles are slowly deteriorating over time, causing me to not be able to walk or stand up and be very weak overall,” said Marley. “However, I have been receiving a new drug for people with SMA and since starting it over a year ago I have seen my breathing improve immensely, and I’ve gained some more movement in my arms, as well as more control in my neck.”
Marley, now 18, loves photography, traveling and music. She is half Australian and has had the opportunity to travel to Australia several times. “I love photography, the entire process that comes with creating a photo,” said Marley. “Recently, I got a camera setup for my wheelchair so now I have almost full control of the camera. Before I could only use my iPhone to take photos but now I have the ability to use an actual camera and benefit from its amazing quality.”
Marley said, “I also love music. I’m always on the search for new music and will play a song on repeat until I can’t stand it any longer. Right now, I’m really into alternative rock like Arctic Monkeys and The Strokes, but I’m also into older 80’s brit post-punk like The Psychedelic Furs and New Order. Music allows me almost to escape the world I’m living in and just jam out to the heavy guitar riffs and drum beats pumping through my headphones.”
This fall, Marley started a new chapter in her life – college, at Northeastern. “I’m definitely excited to start learning about what I’m actually interested in, which is computer science, French and/or photography,” said Marley. “No more annoying history classes that I’ll have to try to get through without falling asleep. I’m excited to start this new chapter of my life, but I’m also really nervous about it all. My parents have been my primary caregivers since I was born, so it’s going to be hard to adjust to a new person taking care of me.”
Marley received her first chair from Numotion when she was two years old and recently upgraded to her fourth chair. “I don’t really remember a time when I didn’t know about Numotion. They have always been a huge help,” said Marley. “My ATP, Toby, has been amazing. We’ve known him since I was really little so he knows just about everything that I need. Whenever my chair needs repairs or we look into new equipment, Toby and his team are always there to help us out and modify everything to my needs.”
While being in a chair can be frustrating at times, Marley values her powerchair and the mobility and independence it provides. “If I didn’t have my powerchair I’d probably be stuck in a manual wheelchair relying on other people to move me around,” said Marley. “I hate relying on people to do things for me so my wheelchair has definitely been a lifesaver. Without it, I wouldn’t be able to go for walks in the woods with my mom, get around cities independently or even be able to talk to people at eye-level. It’s especially handy at concerts and events when you have an excuse to cut the lines.”