Help bring Palliative Care to Indonesia's children

Reaching the home of five-year-old Caca (not her real name) is a challenge. To enter this kampung (high-density, low-income urban settlement) in East Jakarta, you need to crouch down to pass under a wall. Having successfully navigated this first obstacle, you must then thread your way carefully along narrow, muddy paths beside canals that are fetid in the dry season and overflowing in the monsoons, before finally reaching Caca’s home. 

The gleaming skyscrapers of Jakarta are visible on the skyline; only a short distance, but a world away. Many of the families in this kampung are trash pickers (people who collect trash to find valuable goods for sale or simply even food to eat), whose informal waste processing helps keep Jakarta’s streets and skyscrapers clean at the expense of their own. 

Caca, who was born with HIV and who lost both of parents to the disease, lives with her ‘Nenek’ (grandmother) —and her grandfather. Caca’s grandfather is a trash picker, and her grandma works all day peeling shallots, earning just 500,00 (USD $3.5) for peeling 30 kilos. The family’s earnings are meagre, and the work is hard and unrelenting. But despite their financial difficulties, they make sure that Caca gets the treatment she needs and take care of her as best as they can. The community in this kampung also cares for Caca, looking after her and sometimes even providing her with food when her grandparents are not able. 

At least once every week, nurse Ria from Rachel House visits Caca for a check-up, Because of Caca’s HIV – and certainly not helped by the environment that she lives in – Caca’s immune system is weakened, meaning that Caca has pulmonary tuberculosis and is more likely to pick up other illnesses. Whenever she visits, nurse Ria often brings infant milk formula and other things Caca might need. Sometimes Ria will also accompany Caca and her grandmother when they need to go to a clinic or hospital for a specialist appointment or to pick up prescription medicines. 

As well as checking Caca’s symptom and her progress, Ria also spends a lot of time making sure that Caca’s grandmother can properly care for her. Health literacy is almost non-existent in this part of Jakarta, and nurse Ria patiently teaches Caca’s grandmother how to administer and safely store Caca’s medication, and to make sure that it never runs out. With each visit, Caca’s grandmother seems to be getting better and better at this.

Besides helping to monitor and improve Caca’s physical health, Nurse Ria is there to improve Caca’s life emotionally and socially. She is also there for Caca’s grandmother to share her worries, confusions, sadness, and fear, things that she may have no one outside the family to speak to about.

Thanks to the support of GlobalGiving donors, nurse Ria and the Rachel House team have been able to provide Caca with the care she has desperately needed. Caca’s illness has now stabilised and her health has been (slowly) improving. Caca used to throw a lot of tantrums when nurse Ria first met her – most likely because of being sick all of the time – but now behaves more respectfully towards strangers and her grandmother.  Additionally,  Caca even has a real mattress to sleep on for the first time in her life, thanks to the generosity of the furniture company JYSK.

Best of all, Caca has even been able to return to school and to play with her friends like a normal girl. Nurse Ria’s support and aid to Caca, and her encouragement to Caca’s grandmother, helps Caca to live a life a little girl her age should have.