Redefining Survivorship: Sidney Chahonyo’s Journey to the Frontlines of Change
Sidney Chahonyo didn’t just survive childhood cancer, he turned it into his life’s mission. From late diagnosis and long-term side effects to facing deep inequalities in access to care, his story is one of resilience and determination. But instead of remaining silent, Sidney chose to speak up on behalf of millions. Today, he serves as the first survivor on the Board of Childhood Cancer International (CCI), leads global initiatives like SurNet, and challenges traditional models of representation proving that people with lived experience belong at the forefront of change. In this interview, he shares his journey and his vision for the future of the global childhood cancer movement.
Can you share a bit about your personal journey as a childhood cancer survivor?
At 19, I was on the brink of chasing my dream—studying aeronautical engineering in Florida—when cancer rewrote my story. What began as mild flu-like symptoms, headaches, and nosebleeds escalated into hearing loss, leading me down a grueling path of misdiagnoses and frustration. After six months of uncertainty, I was finally diagnosed with nasopharyngeal cancer.
Treatment was brutal: chemotherapy and radiotherapy ravaged my body—nausea, relentless pain, rapid weight loss, and the mental toll of isolation. Friends faded away, and my family bore the emotional and financial strain. Yet, through it all, faith, resilience, and an unwavering support system carried me forward.
Today, over two decades later, I still navigate long-term effects—profound hearing loss, ongoing health challenges—but I wear these scars as a badge of survival. More importantly, they fuel my mission: ensuring no child faces cancer alone. My journey is not just about survival; it’s about turning pain into purpose.
How did your experience with cancer shape the person you are today?
Cancer didn’t just change me—it redefined me. It taught me that resilience isn’t optional; it’s the lifeline that pulls you through the darkest storms. It reshaped my perspective, stripping away trivial concerns and replacing them with an unshakable drive to make every moment count.
Volunteering in pediatric oncology wards opened my eyes to the stark disparities in care. While I had access to treatment, so many families faced unimaginable hurdles—financial ruin, lack of awareness, systemic neglect. That realization ignited a fire in me.
Today, I channel that fire into advocacy. I serve on boards like Childhood Cancer International (CCI) and the Kenyan Network of Cancer Organizations (KENCO), and as Fundraising Director for Hope for Cancer Kids. I’m committed to ensuring survivors’ voices aren’t just heard but amplified. Cancer didn’t break me—it forged me into a warrior for change.
What does it mean to you to serve on the CCI Board as a childhood cancer survivor?
This isn’t just a role—it’s a revolution. When I joined CCI, survivors weren’t even eligible to sit on the board. Now, as the first survivor in this position, I carry the hopes of millions who’ve walked this path.
My presence shatters the myth that survivors should be passive beneficiaries. We are leaders, changemakers, and the most authentic voices in this fight. Parents, doctors, and policymakers play crucial roles—but without survivors at the table, critical perspectives are missing. This isn’t just about representation—it’s about rewriting the narrative: survivors aren’t just stories; we are strategists.
How do PWLE (People With Lived Experiences) voices in leadership strengthen childhood cancer advocacy?
Nothing for us, without us. Policies crafted without survivors are like maps drawn by people who’ve never seen the terrain. Well-intentioned? Maybe. Effective? Rarely.
PWLE bring the raw, unfiltered truth about what works—and what fails—in survivorship care. We expose gaps in long-term follow-up, mental health support, and financial toxicity. Without us, programs risk becoming theoretical exercises. But with us? They transform into lifelines.
Our voices force accountability. They turn sympathy into action. And most importantly, they remind the world: we are not statistics. We are experts by experience.
What challenges have you faced representing survivors globally, and how have you overcome them?
The barriers are stark:
Medical gatekeeping: Some still see survivors as “patients,” not partners.
Funding inequity: Donors prioritize researchers over survivors, as if our lived experience holds less value than data.
Underrepresentation: Many global forums lack survivors from low-resource regions, skewing priorities.
But I’ve turned these challenges into fuel. I’ve built alliances with advocates who get it. I leverage storytelling to make our needs undeniable. And I push back—politely but firmly—when survivors are sidelined.
Progress is slow, but every time a survivor speaks at a WHO meeting or shapes a policy, we chip away at the status quo.
How do you ensure young survivors from underrepresented regions are heard?
SurNet is our answer. This global network isn’t just a platform, it’s a movement. We’re bridging gaps by:
Knowledge sharing: Connecting survivors, patients, families, and healthcare professionals.
Awareness and advocacy: Elevating survivorship as a global priority.
Community and support: Creating spaces where survivors inspire and support one another.
Quality of life: Tackling long-term challenges to improve care and outcomes globally.
I also serve on SIOP’s Survivorship Network Steering Group, ensuring medical professionals hear us—not just treat us. True progress means a girl in Nairobi has the same influence as a doctor in Geneva.
What’s your message to young people faced cancer today?
You are stronger than you know. Cancer is a chapter, not your whole story. Listen to your doctors, lean on your loved ones, and never let fear silence your dreams.
And to those feeling alone: we see you. We fight for you. And we won’t stop until every child survives—and thrives.
What progress have you seen in childhood cancer since joining CCI?
CCI has evolved from a parent-led group to a global force. We’re partnering with WHO, St. Jude, and UICC, driving the Global Initiative for Childhood Cancer. Our advocacy has secured policy wins, expanded treatment access, and—most crucially—centered survivorship in the conversation.
But the real victory? Watching survivors rise as leaders. We’re not just beneficiaries anymore—we’re architects of change.
How should PWLE shape the future of childhood cancer care?
I envision a world where survivors aren’t tokens but titans—leading research, policymaking, and global advocacy. Where “Nothing for us without us” isn’t a slogan but a standard.
We belong in boardrooms, at the UN, in labs. We must co-design studies, influence funding, and hold systems accountable. The future isn’t about including PWLE—it’s about following our lead.
What does “Together, we are rewriting the story of childhood cancer” mean to you?
It means unity is our superpower. No single group can solve this alone—not doctors, not governments, not survivors. But when we unite—parents, clinicians, advocates, and survivors—we turn despair into hope, statistics into solutions, and loss into legacy.
Danny Thomas once said, “No child should die in the dawn of life.” Together, we’re making that promise real. Together, we are saving lives.
