Ellie Kerrigan, a 20-year-old student at the University of Alabama, embodies resilience and adaptability as she navigates her college experience while living with spinal muscular atrophy (SMA), an inherited neuromuscular disorder. This condition affects muscle strength and performance, making daily activities a unique challenge for Kerrigan, who relies on caregivers to assist her with fundamental tasks such as getting out of bed and preparing for her day.
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Kerrigan’s journey, marked by careful planning and a robust support system, stands as an inspiring testament to independence in the face of adversity. Every morning, before she can start her day, someone must assist her in sitting up, dressing, and preparing for her classes. This reliance on caregivers is a reality that many college students may never have to consider. “My day-to-day life in college is definitely busy and takes a lot of planning,” Kerrigan explained in an interview. “Every week, I have to ensure my caregivers are scheduled — without them, even getting out of bed in the morning wouldn’t be possible.”
Living with SMA has taught Kerrigan to adapt continuously, learning incrementally about her limitations. According to the Cleveland Clinic, SMA is categorised by muscle weakness, particularly affecting those closest to the body’s centre. This means that, for Kerrigan, structuring her day starts long before her classes begin. “I schedule different people for different mornings based on both their class schedules and mine,” she detailed, highlighting the operational aspect of her life.
Her meticulous planning extends to ensuring she has everything she needs before leaving her apartment for class. Once she manages to step outside, Kerrigan’s routine begins to resemble that of any other university student. “I usually stop by Starbucks or a loaded tea place on my way to class,” she mentioned, noting that this small ritual helps her feel a sense of normalcy as she embarks on her academic responsibilities.
Kerrigan frequently spends her free time at her sorority house, which has become a significant part of her social life and support network. “There’s always a friend there to help me make a plate, and I end up staying to hang out, spend time with friends and get some homework done,” she said, expressing how vital these connections are to her overall well-being. However, this sense of community took time to establish, as moving 12 hours from her home posed challenges that required the creation of a new support system. Kerrigan even crafted a portfolio to find caregivers, many of whom have now become close friends.
Behind the scenes of her college life lies an intricate web of coordination that is often unnoticed. Kerrigan remarked on the necessity of communication throughout her daily routine and how planning for assistance with various tasks is paramount. Yet, the unpredictability of life can disrupt even the best-laid plans. A memorable incident occurred when Kerrigan was caught in a sudden downpour between classes. “The rain was so heavy that it soaked the joystick and wiring on my chair, causing it to shut down completely,” she recalled, highlighting her momentary reliance on the help of others.
Such experiences remind Kerrigan of the fragility of her independence, illustrating that it can shift in an instant. “Independence isn’t about doing everything alone,” she emphasised. “It’s about building a life where I can still do everything I want to do, just in a different way.” This perspective has shaped her outlook since childhood, fostering her ability to participate in activities and advocate for herself in environments that may not have been designed with her needs in mind.
In addition to her studies and social life, Kerrigan has become an active presence on social media, sharing her experiences with a growing audience. Initially posting casually, she began documenting her daily activities and the routines that contribute to her independence. Her followers expanded significantly during her freshman year, particularly when she shared her journey through sorority recruitment, providing insight into her life with SMA.
The feedback Kerrigan has received from her online community has been profoundly impactful. “Some of the most meaningful messages I get are from people telling me that I’ve made them feel less alone or more confident in their own independence,” she expressed, demonstrating how her experiences resonate with others and promote connection.
Through sharing her life, Kerrigan has not only reached out to thousands but also gained a deeper understanding of her own narrative. “It helped me realise that my story isn’t just about living with SMA, but about how I’ve learned to navigate life, build independence and find joy in the way I do things,” she remarked.
What starts each morning with assistance has evolved into a more extensive mission for Kerrigan: to showcase that independence can look different for everyone yet still be fully realised. “I really feel like I got extremely lucky with the community I have found here,” she said, reflecting on her growth in Alabama. “I’m actually building a life here that feels like mine.”
Ultimately, Kerrigan’s journey illustrates that not being physically capable of performing certain tasks does not equate to impossibility. “When there’s a will, there’s a way, and you can do anything you put your mind to,” she added, offering an empowering message to all those facing challenges in their own lives.