CHENNAI: “The last time I stepped out of my house was more than a year ago when it was raining. I wanted to see it closely. That was a first in six years,” said Karpagam.Karpagam lives in a one-room house at Pattinapakkam with her four siblings. When she was in her teens, Karpagam, like her three brothers, was diagnosed with spinocerebellar degeneration, a rare genetic disorder often associated with poor coordination of eyes, hands and speech.Ever since her diagnosis, the four siblings have been confined to their house. But their eldest sister, Suguna, does not have this condition. She has been running the family ever since their parents passed away. “They were broken, mentally. They could not believe that their four children will remain disabled for the rest of their lives,” she said.Their youngest brother Jayaraman, who is 36, has learning difficulties. “He is very friendly. He loves playing cricket with the children. He spends time at a nearby centre for special children playing, drawing and singing,” said Suguna.Their other two brothers, Thyagarajan, 52, and Vishwanathan, 54, are quiet. While Thyagarajan can walk better than the others, he has been advised against it since he tripped and fell on his face, injuring both his legs and hands. “He is always restless,” said Karpagam. Vishwanathan, however, has not stepped out of the house in the past 12 years. Even at home, he sits in one corner, near the kitchen and bathroom so he does not have to drag himself there when needed. He does not speak.The family runs on Suguna’s income. She is a conservancy worker in Anna Nagar . “I am nearing retirement and I have no idea how I will be able to look after them,” she said. Suguna earns around Rs 12,000 a month and the four receive monthly Rs 1,000 disability pension which is sometimes irregular. The amount is spent on medicines, electricity and telephone bills, water and monthly groceries. “We are hardly able to save anything,” Suguna said. Treating spinocerebellar degeneration is expensive and one has to spend around Rs 1 lakh for special devices, medication and therapies. Patients need canes, walkers, crutches or a wheelchair.

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