A life of dependence

Inadequacies in the care and support system of a devastating neuromuscular disease

K. Senthil loves watching television. At his home, there are constant battles with his older sister for the remote, and fights over what show should be watched. His favourites? Cookery shows.

Senthil, 16, has muscular dystrophy, a genetic disorder that weakens the muscles that help the body move. Over the course of about 10 years, his leg muscles have become so weakened that he can no longer walk. He uses a wheelchair, and his parents carry him when needed and help settle him in comfortable positions. Just over a year ago, Senthil's older brother Raja passed away because of the disease. Raja was only 18 years old.

When the boys were born, there was nothing wrong with them, says their mother, Durga. Raja was in Class II, when he began to complain of leg pain whenever he had to climb stairs. At one point it became so bad that we took him to the Government Rajaji Hospital, where they told us it was muscular dystrophy. They then referred us to other hospitals to confirm the diagnosis.

Even after the diagnosis was made, it didn't really sink in. We didn't know what it was, had never heard of it and had never seen it before, said Selvakumar, Senthil's father. We figured we would get all the treatment possible and it would be all right.

Muscular dystrophy refers to a group of genetic disorders. Some of these can affect adults, but the more severe forms tend to occur in early childhood. Duchenne muscular dystrophy (DMD), the most common form of the disease, primarily affects boys. It is caused by the absence of dystrophin, a protein involved in maintaining the integrity of muscle.

The disease is usually first noticed when the child tries to walk. Parents come to us and say that the child has difficulty in walking or keeps falling down, said Dr M Chandrasekaran, senior consultant neurologist at Ramana Hospital. As the child grows, there is a gradual progression of the disease and the muscles of the body waste away. Mental function however, remains completely normal, he said.

By the age of about 12 or 13, the child has significant difficulty in walking and is generally wheelchair-bound. Children with DMD almost never survive beyond the age of 20, said another Madurai-based neurologist. At present, there is no cure for DMD. The goal of treatment is to control the symptoms mostly through exercise and physiotherapy. We do everything possible to give them a better quality of life, said the doctor.

Selvakumar was then a daily wage labourer. Every day, the couple would take their first son to the hospital for physiotherapy. Raja's diagnosis had barely been confirmed when they realized that Senthil too had the same disorder. Raja managed to complete his fourth standard before dropping out, and Senthil did his third standard. Durga spent her days at home, looking after both sons.

It became very difficult to send them to school. The more their leg and arm muscles weakened, the harder it became to carry them from place to place. Eventually we decided to let them stay at home, she said.

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A life of dependence