When Christine Kelly is in her freshman year of college, she’s diagnosed with Hodgkin's lymphoma.
Story Transcript
It's 2022, and I'm in my senior year of college. This is supposed to be my normal year. I'm healthy, I'm living with my best friend, I'm falling in love, and everything I learned in college is coming together in my senior honors thesis focused on international relations.
This is also the first time in more than three years that I'm not in survival mode. On October 4th, 2018, just months into my freshman year of college, I got the call that I had Hodgkin's lymphoma. My prognosis was good, but I would need six cycles of chemo.
Against the urging of my doctor and family, with a lot of assistance from classmates and professors, I continued with that freshman year. Then in my sophomore year, COVID started. My junior year, which was still the height of the pandemic, was all online, but I made it through.
Now, suddenly, my life seems like it's out of control and I'm struggling more this senior year than when I was literally fighting cancer. Maybe it's because I have less interest in the field I was planning to study in graduate school and one day work in. Maybe I've been so focused on making it through each day that I didn't give time to think about the future. And now it feels like it's here all of a sudden, barreling down on me.
I keep thinking, “What am I doing?” as everyone around me is locking down jobs and applying to grad programs and I'm getting that question, “What are you doing after college?” all the time from others.
A gap year, I decide, is my answer. I can regroup, I can travel, I can figure out who I am outside of school, what I want to do, how I can use my skills to make a difference in this world. And that answer lasts for about a month until I realize I definitely cannot afford that. I don't want to blow through my savings after college. I need at least a part‑time job after graduation, a paid internship even, something I can still do to survive while still visiting my family and friends around the world and figuring out my life and career. Because that's so easy to do.
I'm so directionless until an invitation to apply for a social impact fellowship hits my inbox like an answer to my prayers. If selected, I'd work a part‑time paid internship for a summer at one of their partner organizations. At the same time, the fellowship would offer me professional development opportunities, something I felt I really needed. Everything from career advice to discovering my own personal theory of change. It sounds like the perfect answer to this question plaguing me.
It's now May during finals, and I feel like it's down to the wire. I hear back from the fellowship that I was accepted and jumped at the opportunity to interview for a marketing internship with Chelsea's Hope, a small rare disease nonprofit. All I can think, though, is, “What am I doing,” as I nervously wait on Zoom one afternoon. I'm thinking, “I probably shouldn't have had two coffees today.” I'm so anxious that I worry I won't be able to answer that Tell-me-about-yourself question I'm expecting. I have no marketing experience and basically no science background. I had never even heard of Lafora disease before. I have spent hours combing through the organization's website and social media, so I know this is so different from everything I just dedicated four years to learning about.
Niki joins the call and puts me at ease right away. Even though it is early morning for her in Australia, she is energetic. She starts explaining how Lafora has impacted her family and the ways the organization works to raise awareness and funds for treatment. Our interview feels just like a conversation.
A week passes. I turn in my thesis. I graduate. Just as exciting is my acceptance. “Congratulations,” an email subject line reads, and I accept the internship.
The fellowship training starts at the end of May, and my internship with Chelsea's Hope starts June. I feel immediately like I am launched into the deep end of the pool as I get the social media logins, meet the new science director, attend board meetings, and assist with the Lafora Science Symposium that's just three months away. I'm quickly learning, though.
My experiences as a young adult with a rare disease made me very sympathetic to the patient community, although Lafora could not be more different than lymphoma. Unlike the cancer I had, we know what causes Lafora. It's an autosomal genetic disorder, ultra rare and fatal. Around adolescence, patients develop a toxic accumulation of glycogen that leads to increasingly severe seizures, ataxia, and cognitive decline. I describe it to others as epilepsy and childhood dementia, which shocks them. It's an awful disease, and sometimes I feel helpless.
In August, my fellowship wraps up. I've been keeping everyone at the team updated as I travel and apply for new positions. They extend my internship, and I'm invited to the 2022 Lafora symposium.
While I've enjoyed my summer with Chelsea's Hope, I'm wondering again what's next. Those thoughts chase me through the first morning at the science symposium. I'm so grateful to be here in San Diego, but I feel like I'm sticking out like a sore thumb, leaning against the back wall of the auditorium as I charge my phone. The AC is working overtime in contrast to the sunny day outside, and my body aches from being on my feet most of the morning.
My mask is tight across my face, the room half full of people listening to the speaker below. They're taking notes, they're working on their own slides for later, they're watching the presentation. They all look like they belong here. These are academic researchers, clinicians, and families affected by Lafora disease, all experts in their own ways.
I half listen while I share photos on the organization's social media, the data and conclusions going over my head. At least I know how to do this. I know social media.
During 2020, in the height of the pandemic, I started an online book blog on Instagram. I loved reading. I loved the way social media could be used so positively in a time of global isolation, a time I was feeling so alone myself. I learned how to use Canva and manage social media for college organizations I was a part of after that, too. It turns out it was those experiences that helped me get an interview for Chelsea's Hope.
I remember my anxiety before my internship now. Despite all I've learned in the past three months, a part of me feels highly unqualified to be here, especially hours after hearing new terms at the symposium and being one of the few people without an MD or PhD after their name.
What am I doing here? At least now I have a clearer picture of what I want to do moving forward. My fellowship taught me I am not ready to go back to school, and I have to find something where I can continue to do good work with caring people, something I love about Chelsea's Hope. I also need to be able to support myself, because three months of a nomadic lifestyle this summer have taught me that I want to settle down soon. I'm not sure I can keep up travel until next year.
Here's what my next two weeks look like. I'm heading back to my grandpa's in Houston, then Austin, Dallas, Vancouver, back to Dallas and to Madison, Wisconsin for a campus tour of a company. I'm 75% sure I'll start work in November there. It would be my first full‑time job and the benefits seem incredible, including an education stipend if I do change my mind at school.
Over the next few days of the symposium, though, the “what am I doing here” question takes on a tone of awe, of disbelief that I'm so fortunate right where I am, which is an odd thing to think given the situation. But meeting the team in person, seeing the research presentations, what I understand of them anyway, and even the gut‑wrenching realization that no treatment options are moving forward at this time and we really have our work cut out for us, well, I have a new path forward forming in my head. Could I stay with Chelsea's Hope?
Because there are multiple therapies in the pipeline, but funding and time are always lacking, the organization has been working for years to bring an asset off the shelf that was shoved on by COVID and I could help with fundraising. Really, I want to help with whatever they need.
That realization hits home in the bitter cold of Wisconsin a few weeks later. What in the world am I doing here? It's the middle of October and it's snowing. I'm not used to this from Texas, and I'm not so sure about all the talk I keep hearing about supporting patients from the company as I'm touring either, because I feel I'm already doing that in a way that seems more tangible and impactful, even if turning down this opportunity would create more questions for my future. It's against the advice of someone close to me, but I've done that before.
Later that month, I asked the executive director if I can increase my hours at Chelsea's Hope. When she agrees, I turn down the company's job offer.
In November, I transitioned from my marketing internship to part‑time work. I learned how to update the website, fundraise, launch our volunteer program, and assist with many family support initiatives. The next year, I start working full‑time for Chelsea's Hope.
It's now January 2026 and I've been feeling an itch to return to school. Really, God only knows what my future holds. But over the last three‑and‑a‑half years, other opportunities have come and gone, each leading me to the firm belief that I'm right where I'm meant to be. After three more science symposia, frequent online events, connecting with dozens of new families, and fundraising for the first ever safety study for potential treatment for Lafora, I now believe that showing up is everything, no matter your skill set.
On a more serious note, Lafora disease is devastating. Sometimes it feels like the disease takes lives faster than you can ever help people. On my darkest days, I still feel unqualified, burned out, and like nothing I do will ever be enough. But the families living with Lafora everyday don't give up, so neither do I. Researchers, clinicians, the team at Chelsea's Hope, they keep fighting. So do I. And it's those connections that keep me going. Beyond believing in the mission of the organization, it's the people I know and the stories we share that encourage me.
So that earlier question, what am I doing? I'm showing up. I'm proud to be one small part of this movement to cure Lafora disease. I'm clinging to hope that, one day, there'll be no need for my job by making a brighter future.
Thank you.