Help bring Palliative Care to Indonesia's children

In a 1-room house measuring 3 x 8 meters shared by 5 adults and 3 children, lay a little boy on a thin blanket on the floor. The room had no windows other than an open door that let in the hot dusty air, and sometimes a wandering rooster from the streets. For Sani, the skinny little boy lying on the floor right at the doorway, this is his whole universe – where he lies all day, every day.

At the age of just one, Sani lost his mother to HIV. When he was two, he was diagnosed with HIV with an obstructed bowel complication that resulted in a need for a colostomy.

When he was first admitted under Rachel House’s care, his father was still around and his grandfather was still alive. Both are no longer around, leaving him with his grandmother as his sole caregiver. She was the one who would nurse him through his endless fits of cough, his fever and breathlessness; the one who would change his colostomy bag ten times a day, and administer his medications – or at least tries to, as she constantly struggles to remember which medication to give and at what time.

Alone, caring for Sani and his 2 older siblings, his grandmother grows despondent. She tires easily, emotionally and physically. Sani begins to miss his doctor’s appointments at the hospital. A trip that would involve taking 4 changes of buses and a motorbike-taxi ride; a trip that not only takes 3 to 4 hours, but also one that would require funds that the Grandma no longer has. No appointments means no medications. No medications mean a compromised immune system that threatens Sani’s survival.

Rachel House’s nurse, Neng, who visits every week has watched the deterioration of the family condition with alarm. Sani has grown quiet since his father left. He has stopped eating, rejecting and throwing up food even with a feeding tube. Being close to his grandmother, Sani must also be sensing her worries.

Whenever he sees Neng enter the room, he will reach out with his feeble hand, motioning her and grunting for her to hold him. The grunt only stops when he feels her hand stroking his arm gently, while she speaks to him and his grandmother. Sani craves for a hug and a human touch – all of which is no longer available as his grandmother grows tired and preoccupied with financial worries. Neng sees the dark circles under the grandmother’s eyes and senses the burden she is carrying. So she listens to her stories and tells her what a remarkable job she’s doing.

“Come on, let’s care for Sani together,” Neng rallies behind her. “Let’s go to the hospital next week. I’ll meet you there so you won’t have to be alone,” Neng promised.

Determined to deliver the love and human touch that Sani craves for, however many remaining days he has left, Neng rallies the support of volunteers to take turns to visit – bringing him the love that he longs for.

For Sani, this may be all he will ever have; and so we make this moment count.