VISHAL PARDESI (13) loved reading English storybooks in school and play- ing cricket with his neighbourhood friends in Walkeshwar chawl. He can now do neither. The Saurav Ganguly fan cannot even lift a ball and he has been moved to a school where the medi- um of instruction is Marathi because he could not cope with the flight of stairs in the school he used to attend.

In the age of information when a Bol- lywood film helps spread the word about dyslexia to millions and the World Autism Day got wide coverage last week, few would know what is ailing the boy .

Pardesi is suffering from Duchenne Muscular Dystrophy (DMD), an incur- able disease which progressively weakens the body's muscles, confining the patient to wheelchair and then, the bed. Children suffering from DMD rarely live to see their 20s.

The average lifespan is 1520 years, even with good care. Their heart and lungs get affected, eventually leading to death.

DMD almost exclusively affects boys, occurring in one in 3,500 live male births across the world, though the incidence could be higher in India because of lack of awareness, say doctors.

Pardesi's father Rakesh who irons clothes for a living, and mother Rina who is a housewife, do not understand what has happened to their son, but they know there is no treatment. Pardesi, who is now wheelchair-bound, goes to a school run by the Society for Educa- tion of the Crippled at Agripada. Rina takes him to school and stays with him through his classes.

But she can't go on like this. Her younger son Vineet (8) has also been di- agnosed with DMD. Besides, the taxi ex- penses are proving too much.

Pardesi is just one of the countless children and adults in India who are living with DMD or the other eight types of Muscular Dystrophy (MD) which affect people of all ages, includ- ing females in rare cases. No cure, no support Till date, there is no known medicine, treatment or surgery that cures mus- cular dystrophy One can only improve .

the quality of the patients' lives by care and regular physiotherapy .

But there is little being done for these patients, primarily because there is no awareness. If Pardesi had autism or cerebral palsy he could have , received home-based care from trained persons appointed by the government under the National Trust for Welfare People with Multiple Disabilities, Autism and Cerebral Palsy .

When the Government of India set up the statutory body in 1999, there was no awareness about muscular dystrophy so it was not included.

"We are not covered under the Persons with Disabilities Act either. Those with multiple disabilities like a hearing and vision impairment are covered but not us, even though muscular dystrophy affects our entire body including heart , and lungs," said Anjali Agarwal, who runs Samarthya, a Delhi-based NGO for promotion of rights of the disabled.

Samarthya has been campaigning for inclusion of all 44 types of neuromuscular disorders, including the most serious nine types of dystrophies - around 2 lakh Delhiites suffer from the disorders, according to Samarthya; there is no estimate for Mumbai.

"Support services from the state are completely missing," said Agarwal, who suffers from limb girdle muscular dystrophy .

"We need help to even perform the most basic functions like brushing teeth. Most of us can't afford care givers." Forced to drop out Lack of awareness regarding MD also means that there are no provisions in schools to make life easier for students suffering from the disease. While mainstream schools have started assimilating dyslexic students and those with cerebral palsy, they have no provisions for dystrophy patients.

"I know of cases in which the Physical Education teacher has scolded the child for not running because he didn't understand the condition," said Bharati Chabbria, coordinator of the Muscular Dystrophy Society which was set up by late neurologist Dr Anil Desai of Jaslok Hospital in 1973 to work for the rehabilitation of muscular dystrophy patients.

"School buses don't have wheelchair access and most schools have classes on higher floors, where it is impossible for MD patients to reach. Besides, unlike other wheelchairbound children, children with MD can't even use their hands to write so they need a lot of special support," said Chabbria, adding that many affected parents simply stop sending their children to school.

The only schools in the city that had all the necessary infrastructure and provisions for children with MD were those run by the Society for the Education of the Crippled at Agripada, Antop Hill and Santacruz, said Chabbria.

In most countries abroad, especially in the West, there are special institutions where muscular dystrophy patients can live or receive day care.

Chabbria recounted the story of Mumbai-based twin brothers who had moved to the United States because they suffered from limb girdle muscu lar dystrophy "After they completed . their MCom here, the family took them to the US. Now they are living independently in San Francisco while their parents have come back. A caregiver comes to help them with their morning chores and serve them breakfast every day, after which a van comes to pick them up for the rehab centre where they do some computer work for which they are paid," she said.

Bombay Hospital Neurophysician Dr Satish Khadilkar, who has worked with the MD patients, said institutions are not suitable for India since parents here don't like their children living away from them.

"Home-based care is ideal since it is very difficult for their families to take MD patients anywhere," said Khadilkar.

He said financial and social support was also essential since some families neglected the child. "There is no therapy , so the interest of parents in taking care of the child also peters out," he said.

Mumbai had no parents' associations or support groups for MD until recently. But now Ruchika Batra, whose 5-year-old son Adrith suffers from DMD, has established contact with 40 other parents and volunteers and formed a Yahoo group called ‘India Fights DMD'.

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The charm of my life is fading day by day'