Living for little Kusani

Parents' battle to look after an 8-year-old child, immobile since birth

By Kumudini Hettiarachchi

Ananda and Thanuja with a smiling Kusani. Pix by J. Weerasekera

The pretty girl on the bed will be eight on April 10. But looking closely, realization dawns that all is not well with her, for she lies immobile with her limbs aflop. Kusani Kaushalya is different to most other eight-year-olds who would be attending school, doing a sport or two and would not need looking after like a baby. But that is just what Kusani's parents have to do, for their little one is a victim of cerebral palsy.

"She can't do anything," sighs mother Thanuja Dilrukshi, gently stroking Kusani's palm as she sleeps with her head tilted to a side and her hair tied up with a brightly-coloured band.
When The Sunday Times met the family of father, mother and daughter, they were at the Gampaha Hospital as Kusani had found it difficult to breathe and had been brought there. Sema amaruwa hariyata hedenawa, says Thanuja, explaining that she is prone to phlegm ailments.

Going down memory lane to the beginnings of their life as a couple, Thanuja recalls the happy times. She met Ananda Hemachandra in Ruwanwella. He was a small-time textile trader and although he was from a village in Kandy, he had set up his flourishing business in the Pettah in Colombo. "I used to sell skirts, blouses and other clothes," chips in Ananda.

Marriage followed and they set up home in Imbulgoda, renting out a tiny two-room house, with hopes and plans of buying a piece of land and building their own place. They, in fact, did buy the land but put on hold their plans because there was good news. Thanuja was expecting a baby and they were overjoyed. "The baby came early. Kusani was born at 33 weeks at the Ragama Hospital and had to be kept in the baby room for 33 days," says Thanuja.

Back home from the hospital, life had changed as it does with a newborn around with sleepless nights and numerous nappy changes. There was also the reality that the baby was different. From then on, the parents have had the task of looking after a special child. Not that they are angry or frustrated about it. They care for her lovingly, but life has changed forever.

Kusani's frequent illnesses have compelled Ananda to give up his textile sales and go into the tent business - he sells the tents displayed along Havelock Road. "Now, because of the security concerns, I have been asked to display the tents only two days a week," says Ananda who is struggling to make ends meet.

Kusani is living on liquids, as she is unable to take any solids. So it is malted milk or cereals that are her diet throughout the day. The hardships have made the couple sell off the land they had, ending their dreams of building a home of their own. Still living in the rented home, they pay out Rs. 3,000 monthly to keep that roof over their heads.

Grateful to the Gampaha Hospital doctors and staff who, the parents say, are very caring and also advising them on how to take better care of Kusani after she is discharged, Ananda and Thanuja have committed their lives to their daughter.

"Kusani knows when we are around," says Thanuja, adding that if Ananda is not home for more than two days she cries unendingly but stops the moment he walks in. And what does the future hold? Thanuja and Ananda do not know. The only certainty is that they will look after Kusani all their lives.