Help bring Palliative Care to Indonesia's children

Rian's story is a tale of a child's strength and tenacity, the courage to live with the fullness of joy even when plagued with constant physical pain and suffering. His brief life reminds us of the incredible impact of love and devotion on one’s journey with sickness.

At Rachel House, we understand the importance of love and support for families like Rian and his grandmother, making sure that the family had everything they needed during the most challenging of times - nutritious food, medication, medical equipment, and even birthday cakes to celebrate important moments. We hold the vision alive in our hearts always, that no child should ever have to live or die in pain. Join us to help these children living with serious illnesses to bring joy to their lives, and a smile on their faces. In fact, giving does not only help another, it brings happiness to ourselves.

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Rian, born in 2017, hailed from a little village in West Java. His father had chosen to move the family to Jakarta, the capital city of Indonesia, hoping for a better life. Rian’s father is a fisherman and is often away for long periods of time, while his mother had passed away when he was just two. Rian’s grandmother is the main caregiver for him and his sister. Together, they live in a small two-room house that they rent. With Rian’s father being away more than he was home, Rian’s grandmother often has to rely on the kindness and generosity of their neighbours for assistance.

Rian was born with an immunity-compromising illness that rendered him susceptible to multiple infections. His health situation proved immensely challenging for this 6-year old boy who had not yet grasp the harsh truths of existence. Thankfully, Rian had his grandmother by his side, a steadfast presence who cared for him and his sister tirelessly, in spite of the many challenges and constraints.

The Journeys with Rachel House

Ever since he was a wee little boy, Rian had suffered from prolonged diarrhea, dehydration, persistent ear infections, and multiple skin infections that deteriorated into severe wounds on his legs. In late 2018, his attending physician referred him to Rachel House for palliative care and assistance at home. 

Rachel House’s nurses, with the enthusiastic support of our trained community health workers, visited Rian regularly to attend to the multiple symptoms that caused distress to the little boy. During these visits, Rian would also receive  high-nutrient milk supply to ensure his body had sufficient nutritional support to help him fight the infections and hopefully thrive. Our nurse would work closely with and provide guidance to Rian’s grandma as she struggled to understand the long list of medications that Rian had been prescribed, to ensure that these medications were properly administered. Our team became the listening ear for grandma’s fears and worries, as we provided her with the assurance that we were always by her side, and that she was never alone.

With grandma’s devoted love and Rachel House’s support and guidance, Rian's health gradually improved and he was growing into a bright and cheerful boy full of vigor and energy. With this wonderful development, Rian was eventually discharged as Rachel House’s patient in November 2019.  

But The Challenges Continued…

During the darkest days of the COVID-19 pandemic, with fear and panic everywhere, especially in the hospitals, things started to turn for the worst for Rian.

It began with Rian’s father losing his job as a fisherman and finding it difficult to find employment. The financial cost of taking Rian to the hospital for his regular check-up became impossible, which meant that Rian ran out of the medications that he needed to keep his health stable. Soon, his old “friends”, the multiple infections, returned to plague him. 

In November 2023, four years after he was discharged from Rachel House’s service in good health, Rian’s attending physician referred him back to Rachel House’s service. Sadly this time, he was admitted in a semi-comatose state, due to TB meningitis that was presented too late for treatment. 

With great sadness in our hearts, Rachel House's team admitted Rian back to our service. Our nurses made every effort to keep Rian comfortable at home, and provided emotional support and guidance for Rian’s distressed grandmother. She had to face this tragic turn-of-events alone, as Rian’s father was at sea. Our team helped prepare her for the potential challenges that lay ahead, to help strengthen her resolve and assure her of our 24/7 presence.

Within a few weeks of the 2nd admission to Rachel House’s service, Rian passed away peacefully at home, in the loving arms of his grandmother - ending his short and tumultuous journey.

Rian’s grandmother was unconsolable, blaming herself for his death. Rachel House’s team stayed close by her side, knowing that she was alone in this time of great sadness.  Rian's father arrived home a few days after his death, and was totally devastated by the news. He could not believe that the boy who was still a bouncing ball of joy when he left several months ago has now gone forever.

Love Carried Rian Through to The End

Rian’s story is one amongst the many like him and his family who faced immense challenges in accessing healthcare and assistance, particularly during the panic and uncertainties of the pandemic. The difference in Rian’s journey was perhaps the love and devotion that he received from his grandmother and his father, and the support and guidance that the family received from Rachel House, especially when the roads were bumpy and rough. Rian’s grandmother told us that Rian had a beautiful smile etched on his face when he took his last breath. May his soul find peace and rest in heaven. 

*name change due to privacy