(by Karenina – Communications and Fundraising Officer)
Rian*, born in 2017, hails 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 for his family. 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 is living with an immunity-compromising illness that renders him susceptible to multiple infections. His health situation proves immensely challenging for this 6-year old boy who has not yet grasped the harsh truths of existence. Thankfully, Rian has his grandmother by his side, a steadfast presence who cares 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 time, grandma’s devoted love and Rachel House’s support and guidance, Rian’s health gradually improved. The symptoms that used to plague him, the diarrhea, infections and wounds on his leg healed, and Rian 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, Rian 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 was facing this shocking turn of events alone, as Rian’s father was at sea when this happened. Our team helped prepare her for the potential challenges that lay ahead, to help strengthen her resolve and assure her of our presence 24/7.
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, and he desperately wished to see him one last time.
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 health care 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 nurses, 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