Imagine not being able to walk from your front door to your car, or even from one end of the room to the other.
For Molly McGlone, that’s a daily reality.
For almost her entire life she’s had a disease called Spinal Muscular Atrophy.
“My muscle function, it decreases rapidly. Over time you just lose your muscle. I used to be able to hold my arms above my head, but now I can’t even – I can’t even lift them off my armrests,” McGlone said.
SMA is a neuromuscular disease passed on genetically.
While neither parent has to have it, both must carry the recessive gene.
“One in 40 people are carriers of this defective gene,” Regina Spiroff, Molly’s mom, said. “Spinal Muscular Atrophy is a disease of the anterior horn cells of your spine, not necessarily a disease of the muscle. It’s a disease of the spine that stops messages being sent to the muscle to grow.”
Molly still maintains some mobility, thanks in part to her power chair as well as her team of personal care aides.
“I think it’s just great to point out we’ve got an excellent team working with Molly,” Molly’s care manager, Ashly Kronbeger said. “Her parents are very supportive in the team. They’re the driving force behind helping Molly make these choices for herself and they’ve done an excellent job in raising a wonderful, beautiful, well–adjusted daughter, so I’m blessed to be able to work with Molly and blessed to have the jobs that I do.”
Molly personally chose her aides, a process called self–determination.
“I think more people need to know about self–determination,” Kronberger said. “Being able to select your own aids and being able to take it upon yourself to be really pro–active in your care.”
Molly’s aides also help her stay focused on her studies as a pre–med student at Northern Michigan University.
Knowing what it’s like being the patient, she knows her experience will help her develop an excellent bedside manner.
“It’s scary being a patient,” Molly said. “I’ve had some close calls and when you’re that vulnerable it’s like, you want someone there who you can feel comfortable around and kind of understands you.”
In addition to wanting to be a doctor, Molly also composes her own music. It’s something she picked up one summer, but it’s much more than a passing interest.
“And all of a sudden I just, like, started just writing music. I was like, ‘Oh, where did this come from?’ And then I created a song and when I created that song it was like, the best day ever,” she said.
“This is a girl that’s handicapped; she can’t do anything,” Kiril Spiroff, Molly’s stepdad said. “And here she’s composing all this music and she’s building these beautiful videos and you’re just in amazement. How is she doing all that? My dad asked me, ‘Well, who’s playing the instruments?’ I said, ‘Molly is; Molly’s making the music.'”
And despite living on her own, Molly is grateful for everything her parents have done for her.
“They fight tooth and nail for me,” she said. “They’ve saved my life a lot ’cause they know me best.”
“Pneumonia was the worst thing she could get,” Kiril said.
“Or even atelectasis, where her lungs would collapse really easy,” Regina added.
“And so, I would carry her, and bounce her and jog around the living room and kitchen in circles, like jogging,” Kiril said. “And she’d be beating on me; she’d be hitting me, ‘Stop it, stop it! Kiril I don’t–’ and so she would be getting upset–”
“And the bouncing would help loosen up her secretions,” Regina interjected.
“So then the process would start,” Kiril concluded, “where she’d start coughing naturally, as best she could. Then we’d use machines to get things rolling.”
But for all of the heavy memories, there are plenty of light–hearted ones as well.
“I remember one of the first video games she got onto, it was one where there was this picture of an avatar running. You could just see her and she was making that thing run and that was her running. You would watch that thing and, ‘Molly what are you doing?’ ‘I’m running right now,'” Kiril said.
While only being able to run vicariously through a virtual character, Molly has never let her limitation be more than an inconvenience.
“There’s not much I can do about it,” Molly said. “It’s not like I can just be like, ‘Oh, I don’t feel like having this disease.’ I’m not gonna dwell on it. I still gotta live my life. I’m not gonna just sit around. That’s just not me. I gotta give my life some purpose; give back a little bit.”
Molly has already lived a more fulfilled life than many of us, and she still has much more to give.