When hope & help seem far away

Afflicted with a disease that is getting worse everyday, a child and her hapless family struggle to survive

By Dhananjani Silva

Unable to walk, talk or move around, she yearns for companionship. A visit to the little garden, in her mother’s arms to feel the evening breeze that comes from the Lunawa beach side is a luxury for her. Yet most of her days are spent confined to the bed or a mattress inside a small house.

Little Kanchana with her mother Janaki

Little Kanchana Dilrukshi Fernando is very different to other six-year-olds. She cannot play when she wants; she cannot tell what she wants to do; what she likes to wear or what she wants to eat. She would not be able to tell you her name or how old she is. All she can do is cry when she feels uncomfortable, and smile when she feels happy.

Why this pathetic plight? Her mother, Janaki, narrating Kanchana’s tragic story, said that at the time of her birth, she was a normal child. Her illness, which resulted in such a dramatic change in her life, began due to a fit she suffered when she was just seven months old.

Kanchana with her grandmother Violet who is of immense support

“One day she got high fever and slept continuously without eating or drinking anything. When I tried to give her Panadol, she could not swallow the tablets, as she was unconscious, and her body became cold too. I took her to the Lunawa Hospital, and I was advised to take her to the Kalubowila Hospital immediately,” Janaki recalled.

“Later, the doctors told me that she had suffered a severe fit. She was in hospital for one-and-a-half months. It took nine days for her to open her eyes. But her legs were not twisted, and her body was not crippled like this then. Day by day her body started weakening in this manner,” said her weeping mother, holding her ailing daughter to her bosom.

Without the support of a father, who abandoned the child and the mother soon after Kanchana’s illness, the only income that this family has is the salary that Janaki earns toiling hard as a domestic. Thankfully, the support that Janaki receives from her 69-year mother is immense, and she is a blessing for this family, says Janaki, as it is she who looks after the child while Janaki is away at work.

“I feel sad when I see this child. I keep wondering what would happen to this mother and the child after I die. My daughter is earning at least a little salary, because she can leave this child with me, but who would be there to look after her after I die? Why did this happen to us? Why has God no mercy on us?” lamented Kanchana’s grandmother, Violet.

Violet does her best to ease the financial burden of her daughter by making kadayappan for the shops in the neighbourhood. “This way I can at least earn a small amount to buy essential stuff for our daily use, such as kerosene, sugar and tea leaves,” Violet said.

Kanchana cannot eat, and survives on liquids and cereals, says Violet. “We give her Samaposha, Cerelac and other milk products. We have to buy at least five packets of milk powder per month and it costs a lot. We also need to have lots of clothes for her, as we have to change them quite regularly,” Violet said.

Janaki and Violet have managed to care for Kanchana, but when it comes to providing her with medicine and nourishment, they find it a great ordeal. They have to visit the Kalubowila Hospital once in two weeks for the clinic, and that involves taking her by train and bus. It is a very tiring journey for the child, the mother laments.

Bedridden she may be and isolated from society due to her illness… but Kanchana needs love and care just like all children of her age.