At Assisi Hospice, we provide specialised inpatient paediatric palliative care services for children and young adults with life-threatening illnesses who need ongoing medical and nursing care throughout their journey.
While all parents look forward to seeing their children grow taller and stronger, parents who have children suffering from chronic conditions often have to bear the pain of seeing them grow weaker. 18-year-old Karthik was diagnosed with Duchenne Muscular Dystrophy when he was 7 years old. His mother, Mdm Nalaini, noticed that he started walking and talking later than the average child, and he had frequent falls. Despite his condition, Karthik was a talkative and bubbly child. He enjoyed attending AWWA School and loved to watch documentaries about animals and nature.
However, Karthik’s muscles were progressively degenerating. About four years ago, he became dependent on a wheelchair to move around. In April 2021, he started having difficulty swallowing. Karthik’s father worked as a storekeeper, while Mdm Nalaini worked as a night-shift cashier to enable her to supplement the family income and care for Karthik at the same time. However, Karthik’s deterioration and increased care needs made it difficult for the family to cope with his care at home. The National University Hospital referred Karthik to Assisi Hospice and he was admitted in May 2021.
Our clinical team helped to manage his symptoms of pain which he experienced due to a breakdown of his muscle fibres towards the end stage of his life. As he experienced progressive weakness and required more help for transfers and activities of daily living, our nurses provided support for him.
The Assisi team provided him with psycho-emotional support as he was a young man facing his own mortality. We were there when he was afraid, when he was asking questions, and when his family needed the assurance that they were not alone in their experience.
Even though Karthik’s condition was deteriorating, his spirit remained strong. He had a real zest for life and was intent on enjoying it to the fullest. He livened up the whole ward because he was very jovial, with a loud happy voice. We got used to being greeted by this cheerful young man, whizzing around the ward in his motorised wheelchair. He became good friends with our Care team, volunteers, and even other patients in the same ward. His best friend in the ward was an elderly patient Uncle Tan, and they would tease each other and have verbal spars daily. The Care Team organised a celebration for his 18th birthday and he had a blast, celebrating with all his favourite food from the different stalls at Whampoa Hawker Centre and his Iron Man cake, surrounded by his family and the Assisi Care Team. He was a Lego fan and always yearned for a remote-control Lego truck, but felt it was too expensive. He overcame difficulties and completed several smaller Lego sets that our Care team got him. Eventually, we gifted him with the Lego truck set. His strength took a dip that day and he was too weak to put it together, but he had a satisfied smile as he held it in his hands.
Karthik passed away at Assisi on 27 Jun 2021. The memory of his happy smiles remains in our hearts. He has taught us much about life, friendships and living well.