B’desh boys who pleaded for euthanasia saved

Three Bangladeshi youngsters with a rare genetic disorder, which incapacitates muscles leading to early death, will walk out of hospital in a few months, thanks to Mumbai doctors, Air India and the Union Ministry of External Affairs.

In January, when Bangladesh resident Mohammad Tofazzel Hossen demanded his two sons Abdul, 24, and Rahinul,14, and his grandson Shohrab,7, be euthanised with permission from the government. The three boys suffer from Duchenne Muscular Dystrophy, a genetic disorder characterised by progressive muscle degeneration and weakness. The issue had broken into an international debate.

Caused owing to the absence of dystrophin, a protein that helps keep muscle cells intact, patients are likely to survive until the age of 25, said doctors from NeuroGen Brain and Spine Institute, Navi Mumbai, which treated the three on a pro-bono basis.

After the international media highlighted Hossen’s desperate plea for euthanasia in January, Dhaka-based human rights organisation, Ain O Salish Kendra, started helping the family by connecting with experts across the world to seek options for medical treatment. By then, 55-year-old Hossen, who lives with his wife, two sons, daughter and grandchild in a one-bedroom house in the Meherpur district of Bangladesh, had sold his shop and exhausted all the monetary options to avail treatment.

“I had lost all hope. Available medical facilities couldn’t help my children; my life savings were nowhere close to meet the treatment,” said Hossen.

His fate changed after doctors from NBSI intervened to treat the patients free of cost.

Air India agreed to fly the three patients and three attendants for free from Kolkata to Mumbai. The ministry of external affairs ensured the visa documentation was approved on priority.

The three youngsters, who were wheelchair-borne and had started to lose mobility, underwent stem cell therapy on Tuesday. Doctors said within three to six months, all three of them will gain mobility and will be able to walk. “The therapy restricts the disease progression and thus increases muscle capacity gradually,” said Dr Alok Sharma, director of the medical facility, adding the patients will be discharged next week.