For many of us, imagining the plight of a terminally ill child is impossible. When death becomes a reality of life, any small kindness can help to improve a child’s remaining days.
At Rachel House, we help terminally ill children find peace and happiness at the end of their lives. We work in the poorest communities of Jakarta to raise awareness about palliative care, to look for new patients, and to make a difference to the healthcare system in Indonesia on a larger scale.
Since our last report, our nurses have travelled hundreds of kilometres along the back roads of Jakarta to reach patients in their homes, offering pain relief, advice for the parents and a shoulder to cry on. We need more nurses to spread out further into the poorest areas of Jakarta, and to raise awareness in the community.
We will tell you the story of one little girl, Karina, and how Rachel House has been able to help her. How many more children are there who need our help?
Shining a light on those in distress
Karina is a three-year-old girl who has lost her mother and brother to HIV. Karina's father is a gentle spirit, also suffering from HIV: now, they only have each other.
The family moved to Jakarta from their village to earn a living. Karina and her father are living in a car park during the day and sleeping in a rented room at night. Without a residence, they are struggling to get a permit to access healthcare. They have to rely on the kindness of the healthcare centres and on Rachel House nurses to get the medicine Karina needs. Her father is also suffering with his own symptoms, which makes it difficult for him to care for her.
Karina suffers from HIV and Lung tuberculosis, and recently her symptoms have been getting worse. She is unable to eat without vomiting and she cries out for her mother. As she finally realises that her mother and brother won’t be coming back, she withdraws into herself, clutching a photograph of her lost family members wherever she goes.
Without the weekly visits of Rachel House nurses, it would be impossible for Karina’s father to get the medication to ease her condition and improve her quality of life. Due to strong relationships forged with the healthcare centres, the nurses are able to lobby for treatment and help the father get the permit he needs. Karina’s life is hard enough, and if we can ease her pain and greet her with a smile, we can improve her quality of life. A little joy goes a long way.
Training volunteers and community members
From one tree, you can make a thousand matches…
Stories like Karina’s are why Rachel House was founded: on the belief that no one should suffer alone. Our other aim is to change the healthcare culture in Indonesia and the developing world. As in the Western world 30 years ago, palliative care is new to many healthcare professionals here. When a child is terminally ill with cancer or HIV, and when treatments are no longer viable, it is difficult to convince the doctors that it would be kinder to manage their pain and symptoms to make their final days comfortable than it is to keep putting them through painful treatment.
Community Network in Palliative Care (“CNPC”) Program
After careful community research, we set up the CNPC program in late 2013 to help spread the awareness about the aims of palliative care amongst community volunteers and the general population in Jakarta. Targeting the poorest areas, this program has proved very successful in making connections and encouraging collaboration between healthcare centres, nurses, community volunteers and hospitals. It has helped demonstrate that teamwork and communication are needed to give these children the best possible experience in the last days, weeks or months of their lives. Despite being run mainly by one nurse, this program has got off to a flying start. Now we need further help to grow the program and maintain the good work it has already achieved.
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