Helping muscular dystrophy patients - like her son wanted

Helping muscular dystrophy patients - like her son wantedHyderabad, March 23 - Nearly seven years after her son died of muscular dystrophy (MD) while unsuccessfully fighting a legal battle for euthanasia, K. Sujatha is continuing her mission to lend a helping hand to those afflicted with the debilitating disease.

Undeterred by lack of funds and support, the frail homemaker from Vijayawada is carrying on the crusade. The 52-year-old is perseverance personified and unassuming, her only mission being to fill the last days of patients with happiness.

Two years ago, lack of financial help from the government and NGOs forced her to shut the centre run by the Venkatesh Muscular Dystrophy Foundation, which she had founded after the death of her son K. Venkatesh in 2004.

However, she refuses to give up. Currently operating from her residence in Hyderabad, she visits the patients at their homes, speaks to them and tries to lift their spirits.

The foundation has so far identified about 500 MD patients, including 200 suffering from DMD (Duchenne Muscular Dystrophy) in the state.

"They require a lot of care and love as most of them live for five to seven years after it is confirmed that they are afflicted with it," says Sujatha, who visits the homes of many patients to check whether they are taking the medicines regularly.

Realising the need to have an accommodation facility for such patients and provide them the opportunity to show their skills in areas like painting, computers, games, Sujatha has now embarked on a new project.

She is confident that with support from film actress Revathi and some philanthropists, this will become a reality in a couple of months.

That's not all. She manages the out-patient centre at Nizam's Institute of Medical Sciences (NIMS) here once a week, ensures that the patients undergo various tests and counsels them.

Sujatha, who was divorced by her husband in 1992, took up the mission after her son, a chess player, died without his last wish to donate his organs being fulfilled.

Venkatesh, 25, had moved the high court pleading that his life support be withdrawn so that his organs could be donated. The court rejected the plea on the ground that present laws did not permit euthanasia.

Only cornea could be donated as his other vital organs were damaged by the neurological disorder. His death triggered a nationwide debate on euthanasia.

With the Supreme Court this month giving its nod to the possibility of passive euthanasia, Sujatha feels vindicated.

"My son wanted his life support system for a cause. He wanted to donate his organs and was worried that the disease he was suffering from will not allow him to fulfil his last wish," Sujatha told IANS in an interview.

"I have seen the agony a muscular dystrophy patient goes through and if he wants his life support system to be removed to avoid a painful death and to donate his organs, we should consider it," she says.

Sujatha, however, sounds a word of caution. "No one should be allowed to take a decision on behalf of the patient. The decision should also be taken on a case-to-case basis," she said.

According to her, Venkatesh had since childhood been suffering from DMD, which progressively paralyses the muscles, ultimately affecting the lungs and heart and causing death.

She pointed out that young adults in the age group of 20-25 suffer from MD, a result of loss of muscle function in an area of the body, leading to immobility of organs.

"Unlike in areas like HIV/AIDS where a large number of NGOs are working, there is nobody to take care of DMD patients. There is also no public awareness and there is reluctance to provide funds," she said.

Convinced by her efforts, it was in 2008 that then Andhra Pradesh chief minister Y. S. Rajasekhara Reddy had started a monthly pension of Rs. 500 for DMD patients.

Sujatha did everything possible to fulfil Venkatesh's last wishes.

"The foundation was also his wish so that others do not suffer," she says. (IANS)