bought around that time. "We pored over the instruction manual (of the calculator) and handled it as if it were made of eggshells," laughs Atul.

The first four-wheeler, bought at a municipal corporation auction for Rs 20,000, was a beat-up jeep. Soon this was replaced be a new Fiat. Today, they own two cars, two scooters and two trucks for the agency, although "nothing can delight us like that rickety old jeep," says Vipul.

With a second source of income from the agency, Atul started taking risks to expand his business, which began to grow. Archana and Sanjana went to hostels in Chandigarh for further studies and Anurag, the baby of the family, to Shimla for a Master's degree in Tourism Administration (MTA). By this time, the family had also managed to save for Archana's and Devna's weddings. Both have a son and daughter each today, and none seem to have inherited the disease.

The advantages of having a young able bodied adult in their midst dawned on the family only after Anurag returned to Solan in 1994. The unscrupulous among the agency staff, assistants, domestic help, drivers and neighbours would not miss half a chance to exploit the Goyals' predicament. Worse, the family was getting resigned to it.

Vipul remembers the day Anurag caught a drunk driver beating up one of the gas agency staff and abusing his brother. Vipul could only watch helplessly, for the other staffers were out for lunch. Anurag gave the man a thrashing and reported the matter to the police. Ever since his return, the staff and servants have turned a new docile leaf. Says Sanjana, of the other MD families that don't have a young healthy male member: "Their own relatives exploit them."

Anurag has been a great morale boost. Atul has diversified into paints and Vipul into distribution of gas in the adjoining districts. Their businesses have grown exponentially in the past three years.

To outsiders, the family looks wealthy: a house, cars, chauffeurs, servants complete the paraphernalia of an affluent lifestyle. The Goyals may have come a long way, but in their circumstances these comprise the basics of a dignified existence. Says Sanjana: For us, expanding the business and earning more was a question of survival." The disease has kept pace with the Goyals' fortunes.

Today, nobody outside the closed doors of the Goyal's posh new house guesses at the struggle indoors.

For example, Vipul spends about Rs 1,000 a month to run an electric heater in his room. Movement would be next to impossible if he didn't. Sanjana has to take the car, a driver and a helper along when she goes to Chandigarh, Delhi or Jaipur to buy fabric for her boutique. A healthy person would have done this for the price of a bus ticket.

The family spends liberally on domestic help as, indeed, it must to survive. A network of phones and intercoms keeps the Goyals in constant touch with each other. The phone bills are killing, but could they do without? The cost of running a physically handicapped household has meant that despite earning well the Goyals are not rolling in money. "We're yet to buy better beds," laughs Sanjana. The camaraderie barely conceals their precarious existence.

Through all the hardship, the Goyals found the energy to nurture their love of the arts. This love found expression in Fylfot, a club that seeks to promote Indian culture in all its dimensions. This little club in Solan hosts a five-day music and dance fest and a theatre competition in June every year, featuring over 35 teams and 700-odd participants from all over India. Vipul, who edited his college magazine, found time to write. He has published a book of poems and is halfway through a novel that explores the psyche of a handicapped person.

The future. All agree that they couldn't have done it without their mother's strength of character and their father's untiring patience, Says Kusum: "Anybody who called us bechara (poor thing) had no place in the house." The children remember her egging them on: "Get up, climb the stairs, nothing is wrong with you… if you don't move you'll really be ill."

It was their mother's indomitable spirit and the strict regimen she imposed that saw Vipul, Atul and Sanjana through their early youth. Over time, they found their own goals and the will to triumph over their handicap. Nobody outside the closed doors of the Goyals' house notices any more; inside, for the victims themselves, the simplest of chores is still an awesome task. Their day starts at 10 in the morning and preparations for it a good three hours earlier.

The new house is designed to make life a trifle easier. The driveway comes up to the front door; three of the eight dining chairs have castors; Sanjana's bed is higher than usual, so she can get on and off herself; the toilets have rail bars. The house also symbolizes the new confidence that stems from another change. Heading the Solan chapter of the Indian Muscular Dystrophy Association (IMDA) has given the Goyals a new direction if life. "We have found our purpose," says the threesome. That is, inculcating awareness of MD, and supporting the not-so-well-off victims of the disease.

Sanjana writes 100-odd letters a month to MD patients, offering encouragement. The Solan Chapter of IMDA organizes an annual camp where 25-30 patients from Himachal and Delhi congregate. Through the IMDA, the Goyals now provide seed capital to members who wish to become economically independent. Realising that money can make all the difference in the lives of MD patients and their families, the Goyals are committed to providing them a livelihood and as far as they can help, a dignified life.

MD Fact File Muscular dystrophy (MD) is a group of hereditary diseases in which the muscles become progressively weaker. The pattern and rate of degeneration vary depending on the type of dystrophy. For example, facio-scapulohumeral MD sets in during adolescence, and only skeletal muscles are affected. Becker MD sets in at around age 8, and affects the pelvic girdle. Limb girdle MD begins during adolescence or later, and affects the shoulder and pelvic girdle. Ocular MD can occur at any age, and affects the eye muscles. The most common forms are Duchenne's and Myotonic MD. Duchenne's sets in around age 4. The weakening hip muscles make it difficult for the child to rise from a chair or to climb stairs. The disease progresses rapidly: by age 12, most affected children are wheelchair-bound. There is also mental retardation. Myotonic MD begins n early adulthood, and progresses slowly. It affects the face, neck and hands. Besides muscle degeneration, affected people also exhibit myotonia, or delayed relaxation of contracted muscles - for example, difficulty in letting go of something in their grasp. Other symptoms include mental retardation and degeneration of the sex glands. Diagnosis has to be based on descriptions of symptoms. Lab tests are possible only for types in which the gene has been identified, like Duchenne's MD. Genetic counseling and prenatal tests can help in many cases.

Article Courtesy: Intelligent Investor July,1998