Author: Arthi, Chief Operating Officer, Golden Butterflies Children’s Palliative Care Foundation.
This project, conceived and executed as part of a prestigious 2025 Children’s Palliative Care Leadership Program, was guided by a profound belief: pediatric palliative care (PPC) is not just a clinical specialty but a shared act of human compassion. Under the mentorship of Ms. Camara Van Breemen, and guidance from Ms.Stella Matthew, Founder of Golden Butterflies Children’s Palliative Care Foundation, every step of the journey became a lesson in leadership. From conceptualizing the entire exhibition to collaborating with a set designer who was new to PPC, and engaging with diverse teams of interns and volunteers, each challenge was an opportunity. I learned to manage conflicts, prioritize work under pressure, and foster a team where every voice contributed.
In Tamil, the word “Aram” encapsulates a profound concept of virtue, compassion, and the moral duty to act with empathy towards others. It is this guiding principle that inspired the creation of our exhibition, “Aram Vizha,” a name that translates to “A Festival of Virtue.” The event was born from a powerful belief that everyone can play a part and that the profound impact we can make is a true reflection of our moral duty.
As a non-clinical professional, I’ve witnessed first hand a persistent challenge in our healthcare landscape, particularly in Tamil Nadu: a widespread misunderstanding of what PPC truly is. Too often, it is equated with hospice and end-of-life care, creating a barrier of fear that prevents families from seeking the support that can dramatically improve a child’s quality of life from the moment of diagnosis. The need for a shift in public perception is critical, and we knew we had to find a way to make this conversation accessible, relatable, and inspiring.
This is where the idea of an interactive exhibition took root. We at Golden Butterflies Children’s Palliative Care Foundation, deliberately moved away from the traditional, sterile conference room setting. We understood that to reach the heart, we had to go beyond the head. Our exhibition was designed as a journey, a series of ten gamified and hands-on stations that spoke a universal language of empathy and shared experience. We wanted visitors to construct their own understanding, not merely receive information.
The response was immediate and overwhelming. Attendees of all ages—from students to professionals—engaged with stations like “Childhood Rewind,” which used nostalgic 80s, 90s, and 2Ks items to connect personal memories of joy with the essence of providing comfort. Each station was deliberately conceptualized to address a specific PPC concept, from demystifying the scope of care to introducing the basics of symptom and pain management. The “Myth or Fact” booth was a powerful tool for dispelling common misconceptions, and “Mirror Messages” encouraged visitors to see themselves as agents of comfort and change. Our goal was to create a space for one-on-one, non-clinical conversations, allowing our trained volunteers to explain complex ideas in simple, relatable terms.
The impact was measurable and deeply validating. Our pre-and-post survey data—collected anonymously—revealed a dramatic shift in public understanding.
- Before visiting, only 12% of respondents correctly knew that any child with a serious illness, even if they aren’t dying, can benefit from PPC. After the exhibition, this number skyrocketed to over 81%.
- The understanding of PPC’s core purpose also saw a profound change. The percentage of visitors who correctly identified that the main goal is “to improve the quality of life for the child and their family” soared from 13% to over 73%.
Beyond the data, the true measure of our success was in the emotional response and the call to action. The post-survey showed that the majority of visitors left feeling “hopeful” and “inspired.” We were particularly moved by the 57 individuals who spontaneously signed up to volunteer, demonstrating that our exhibition had not only educated but also motivated them to make a tangible difference.
This is not a one-time event but the beginning of a virtuous movement. The “Aram Vizha” exhibition is now a traveling initiative. We plan to take this festival of compassion to rural villages, semi-urban towns, and different cities, ensuring that the message of pediatric palliative care reaches every corner of India. We believe that everyone, regardless of their background, has a role to play in this work—from offering a comforting hand to a sick child to simply spreading awareness.
We invite those who are moved by this cause to join us. If you are interested in collaborating, supporting, or inviting us to your community, please connect with us. Together, we can foster a society where the care of a child with a serious illness is seen not as a burden but as a shared act of profound “Aram.”
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