Muscles wither away, but not smiles

These days Sanjana Goel is working hard to launch disabled-friendly resorts and 25 diagnostic centres spread across the country, at a cost of Rs 1 crore each.The 40-year-old founder president of the Indian Association of Muscular Dystrophy (IAMD)—with 10 chapters and 2,500 members—is widely credited with bringing muscular dystropy (MD) out of the closet. All from Solan, a small town in Himachal Pradesh, best known for its breweries and Salman Rushdie’s ancestral home.

It’s a story that goes back 30 years, when Vipul Goel, Sanjana’s eldest brother, started having difficulty walking. His parents blamed it on a pelvic fracture he’d suffered earlier.

But two years on, his younger brother, Atul, too began to wobble, and then it was Sanjana’s turn. ‘‘Doctors turned us away, saying it was a mild form of MD, but all the same incurable,’’ recalls Vipul (46), who was on a wheelchair when a specialist at PGIMER, Chandigarh, said it was possible to halt the disease with physiotherapy.

Their mother, Kusum Lata, had already been practising what doctors were then discovering. ‘‘She made sure we led as normal a life as possible,’’ says Sanjana, who continued to learn dancing till she was in Class XI before going to Chandigarh for a postgraduate degree in Home Science. ‘‘I cried and cried, but she told me I would be able to manage in a hostel,’’ she recalls.

It was after the trio had become self-sufficient—Vipul with a gas agency, Sanjana with a boutique and Atul in the hardware business—that they thought of turning their attention outwards.

‘‘We began to stake out MD patients in Solan itself and found 30,’’ says Sanjana. That was 1992. Three years on, they invited them for a get-together. Their picnic-with-a-purpose was a hit and led to a three-day camp, which soon became a regular affair, with patients flocking from all parts of India.

‘‘From family counselling, meditation and medical advice to fun games, we do it all,’’ says Vipul, who tells you the hardest bit is to get MD patients out of their homes. One reason why the Goels root for wheelchairs.

How Goels help other patients

• The Goels have given hope to thousands of patients of Muscular Dystrophy (MD) by demonstrating how they can lead a normal life by remaining active • Indian Association of Muscular Dystrophy (IAMD) set up by them in 1995 serves both as a support and pressure group for MD patients. It has 2,500-odd members now • The Goels have forced the government to sit up and take notice of the disease. They are now working for disabled-friendly resorts and 25 diagnostic centres at a cost of Rs 1 crore each

The same year, Sanjana, who’d been corresponding with Dr R Janardhana Rao of Machalipatnam, a pioneer in the field of MD, set up IAMD. ‘‘It was born out of expectations patients had from us,’’ says Sanjana. The little miracles they managed to perform by just being there for others also spurred them on. Suman Pundhir, a patient from Bilaspur, discovered self-reliance when the Goels began to market her hand-painted cards, a young man found his feet with a STD phone booth they helped him pay for, Anjali Sanjeev of Delhi, who’d almost given up on active life, got married and started an NGO called ‘Samarthaya’, all because of regular calls from Sanjana.

‘‘MD patients must keep moving to beat the disease,’’ says Sanjana, who received the President’s National Individual Award for her work in 2004. This human dynamo practises what she preaches. Only last month, she did a capsule course in film-making in Delhi, and even made a 5.30-minute-long documentary on MD that’s yet to be aired.

The can-do spirit of the Goels has rubbed off on thousands. The IAMD has spouted 10 chapters in as many years. Now a patient called Dr Vijay from a town near Tiruchi, is all set to start another after attending a camp at Barog this July.

‘‘Like despair, hope too is very infectious,’’ grins Vipul, who decided to get married four years ago and now has a healthy son.

Sanjana says they don’t need sympathy, only a leg-up. ‘‘It’s an issue of rights, not charity. Considering that 10 per cent of India’s population is physically-challenged, it makes economic sense to integrate them into the mainstream,’’ she reasons, telling you how making places more accessible to the physically-challenged could itself do the trick.

The Goels, meanwhile, continue to do their bit. Last month, they ramped up a hotel in Barog, the venue for their camp, so that the members could navigate every nook and cranny. Sure enough, they had great fun, especially on the concluding day when they danced in their wheelchairs.