Dark clouds that overshadow two myopathic sisters

Stella Young, the Australian comedian, journalist and disability advocate once said, “The thing about disability is that you adapt, you do what works for you.”

Yet at times there are so many difficulties in the form of the lack of financial support, marital failure, lack of a good educational backing, apart from being disabled, that the situation becomes so desperate, that adapting is no longer an option without external support.

Dilini Sewandilka and Nisansala Sajini, 26 and 24 respectively, are disabled sisters living in Galewela, Anuradhapura.

They find it almost impossible to lift themselves up once they have sat on a chair or on the floor. The mother lifted her up and we saw the excruciating pain and fatigue Nisansala underwent in the process, which is to most of us a simple task.

The two sisters cannot raise their arms and they walk very slowly. Each step requires a lot of effort. “When I try to stand up, I feel as if there’s a knot in my backbone, as if it is stuck,” said Dilini trying to stand up holding onto the wall for support.

“It was when we turned 16 that symptoms showed up. The doctor said that this is a result of myopathy,” said Nisansala.

Myopathy is a muscle disease that attacks the proximal muscles of the body, namely the limbs and upper arms.

The disease can be identified when one cannot lift their arms above their shoulders. Treatment for myopathies depends on the cause. However, the cause of their myopathy is unidentifiable. The sad truth is curing the disease is almost impossible when considering cases of congenital myopathy and what makes matters worse is even treatment is only possible when the cause of the myopathy is identified.

“The doctor administered some medicine which made us grow fatter. As a result we fell down more frequently.

Then the doctor asked us to stop taking the medicine and advised us to take vitamins. All the medicines and vitamins are pointless.

Our condition isn’t improving,” said Nisansala. Both Nisansala and Dilini could not continue their education after their O/L studies because of the sickness.

“The disease became an obstacle to our studies as well. When the disease first crept in, we had trouble with getting up from the desk.

But, later it became much worse where even getting into the bus to go to school became an impossibility. We had no choice but to quit school. ” said Dilini. 

At 19, Nisansala was married off to a proposed prospect who was a coolie. “I stayed in my husband’s house for a year. He knew about my sickness before marriage. But later they weren’t happy, berated me for my disability and sent me back to my mother’s house,” said Nisansala. She and her husband are presently separated and would be legally divorced by the end of this month.

Dilini’s situation is more tragic. “ I got married when I was 21…no..24. My husband used to get drunk and beat me. He was often in a bad mood. When I complained to my mother-in-law about the abuse, she used to scold saying that I couldn’t walk or do anything and that her son doesn’t benefit from me at all. She also said that her son should be married to someone else. I was sent back home,” she explained in tears.

After the separation the sisters were taken to the Kandy General Hospital for treatment by a specialist, where Dilini was found out to be 5 months pregnant. “The father didn’t even come to give our son his name.” said Dilini.  Dilini’s son who is 3 years old is looked after by her mother. “His father has turned a blind eye towards not only me, but our child as well.

No financial aid has ever been given by him to look after our son. It is my mother who has kept this family together. ” Neither of the husbands help the sisters.  

They depend on their mother and step-father, who work as coolies. Dilini receives a monthly allowance from the temple which is of Rs. 350/=. They are grateful for the money, but Rs. 350/= is not sufficient to meet the needs of the family. Further, the family is part of the Samurdhi poverty alleviation programme where they receive Samurdhi benefits every month.

However, to receive money they need a job, and a job will only worsen their condition. Their sickness has made them confine themselves to the house. After Dilini left school she started working at a hostel, “The people at the hostel knew about my condition and they were very kind to me. But, my legs began to gradually stiffen.

Soon my condition worsened to the point that I had to resign from the job.” When asked about future expectations their mother, W.N. Leelawathi said, “It would be a great relief and a huge satisfaction to see that my children have a proper house to live in before I die.” The expectations of the two sisters were no less different. “Our expectations? We need a house. Our greatest hope is to get cured though it seems that it is almost impossible. We would also like to get efficient wheelchairs so that we could at least do the basic daily tasks.”

They are two sisters, with a few dreams: a cure, a house and wheelchairs. We can make their dreams a reality by giving them financial assistance. “We rise by lifting others” this was stated by Robert Ingersoll,.  Though, they are a family who are fighting an illness, grappling with poverty and have problems with their marital relations they have not lost hope for a brighter future. Hence, external support is an indispensable need for the very survival of this family. Generous donors could ease the family’s impoverishment by sending their mite to

Account No. 144-2-001-9-0042365 at the People’s bank branch at Hettipola under the name W.M.P.G. Leelawathi.