Help bring Palliative Care to Indonesia's children

From April 3rd to 7th, the Little by Little Campaign by GlobalGiving will be back once again to celebrate the power of the crowd in spreading good.

On this special week, we would like to invite everyone to join hands and support children from marginalised communities living with serious illnesses to have access to palliative care, and help them live with optimal quality of life.

Little acts of kindness will have a big impact. GlobalGiving will match your donation by 50% (for each donation amount up to $50) on this Little by Little Campaign days.

Come join us and help bring the much-needed care to children like Ben (read story below by one of our volunteers), by donating to support our cause through the GlobalGiving platform.

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Swapping my Vans for a pair of sandals kindly offered by the Rachel House nurse I was with, we walked through the quiet and wet streets in the aftermath of the tropical thunderstorm. Strolling through the neighborhood of the patient we are visiting, I was bemused by the number of people who came up to me expressing awe at how “big” I am. This made me even more aware of the patient we will be visiting today. I have been told that the patient and I were of the same age, however his growth and development have been severely challenged by an illness. I was told that he’d look more like a fifth-year elementary student than a freshman in high school. Even with this in mind, I was totally not prepared by the drastic difference in our height when I finally met Ben.  

Ben is a 15-year-old boy, frail and skinny from a diagnosis that has devastated his immunity system since birth. Ben lost his parents when he was a wee baby, and now lives with his grandmother. Rachel House nurses have been a constant in their lives since Ben was 5. 

Ben did not utter a single word during the entire duration of our visit, but you could tell the positive energy radiating from him. His love of play didn’t stop when his TV broke down that effectively ended his routine sessions of Grand Theft Auto. Instead, the simple allure of the modern-day karambol (carrom) ‘Crazy Birds’ captured his heart, and occupied his attention as we played the game during his regular check-up by a Rachel House nurse. His resolve to further entertain himself in spite of his current condition is inspiring to me. Making do with what is present and adapting to it instead of longing and yearning for what could be, whether it be a matter of leisure activities or other aspects of life, is what all of us could learn from this boy. 

I spent most of my time playing with him, flicking paper cut-outs of birds dressed as famous characters like Hellboy or Goku in a homemade cardboard arena he made himself. His sister filled me in for questions as I humored Ben, who is an absolute natural at the game. He beat me countless times and is an excellent sport. I learned about his situation as I played with him, discovering that he isn’t a student at any school at the moment. His illness has drained him of any aspirations for education. His only friends are his former classmates from the first grade. 

His love of play, through digital, analog, and traditional means, has illuminated his days and lifted his gaze from the dire situation with delightful entertainment. These moments of escape that he normally shares with friends and family, were on that evening held with a complete stranger. Through the simple allure of choosing to immerse oneself in a friendly competition with loved ones, pastimes like these can heal even the sharpest of wounds. I am eternally grateful to have played with such a talented sport as Ben, and I wish to duel with him once more in his own version of karambol (carrom) someday.

Despite the immense differences in our upbringing and in our physical size, I believe one thing bonded us – our similar age. The time I spent with Ben makes me tremendously grateful for the blessings in my life, of good health and the means to afford basic necessities - things we often forget are luxuries to millions across the globe. 

At a crowded slum area in Pasar Baru, Central Jakarta, is a steep and rickety flight of stairs. Up those treacherous steps lay a narrow hallway leading into what should be a rather spacious room. Surrounded by heaps of damp clothes and belongings, a mother is seen comforting her children inside.

That Thursday afternoon, I accompanied Rachel House nurses on their visit to Julian*, a 10-year old boy diagnosed with leukemia. The first thing that struck me was that despite the illness that is ravaging his body and limiting his activities, Julian still manages to find consolation in the little things life offered.

A boy with simple aspirations. When asked what he’d do if everything came free of charge, he said all he would ask for is fried anchovies (teri goreng). His modest desire humbled me as it showed how the simple pleasures we take for granted can mean the world to some people.

Julian is the textbook example of perseverance and sheer determination. His illness and the economic challenges of his family have not stopped him from living a joyful and eventful life. His love for spending time with his family, playing football, and watching cartoons - nothing stops a champ like him from enjoying the bliss youth afford.

A black Alphard whizzed by his humble abode, posters of celebrities on the wall trembled. Envy never creeps into Julian's head. He continued to adopt a fiercely courageous and inspiring outlook on his life while living with the life-threatening illness. 

In today’s materialistic and self-centered world, sometimes a simple and humble view of life is refreshing. Children across the globe, many like Julian, living with chronic disease and in environment of economic distress, remaining unshaken by nihilism. 

On the long journey back to the office, I reflected on the time I spent with Julian. While the medical checkup was brief, and his mother did most of the talking, this was truly a moment of awakening for me. It offered me further insight into the parts of life we try to shut out from our minds, the ugly truth we tend to gloss over. Seeing it firsthand really moved me and touched my heart.

Julian’s will to carry on with daily living in spite of his condition is an inspiration to all of us. We should all strive to be more like him. 

*name changed for privacy