HT Exclusive: Mumbai docs save 3 ailing Bangladesh boys who pleaded for euthanasia
Three Bangladeshi youngsters with a rare genetic disorder, which incapacitates muscles leading to early death, will quite literally walk out of hospital in a few months thanks to Mumbai doctors, Air India and the Union Ministry of External Affairs.mumbai Updated: Apr 08, 2017 17:13 IST
Three Bangladeshi youngsters with a rare genetic disorder, which incapacitates muscles leading to early death, will quite literally walk out of hospital in a few months thanks to Mumbai doctors, Air India and the Union Ministry of External Affairs.
It all began 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 (DMD), a genetic disorder characterised by progressive muscle degeneration and weakness. The issue had broken into an international debate in January.
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 (NBSI), 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 local shop and exhausted all the monetary options to avail treatment for youngsters.
“I had lost all hope. Available medical facilities couldn’t help my children; my life savings were no where close to meet the treatment needs for my sons,” said Hossen.
Hossen’s fate changed overnight after doctors from NBSI, which specialises in stem cell therapy for rare neurological disorders, in collaboration with Meditourz, a medical tourism company, intervened to treat the patients free of cost. Doctors said till date, the hospital has treated more than 1,000 patients with similar disorders across 40 countries, with their first patient being a 31-year-old who is able to walk on his own.
Air India, on the hospital’s request, agreed to fly the three patients and three attendants free of cost from Kolkata to Mumbai for treatment. The Indian Ministry of External Affairs made sure the requisite visa documentation for the three patients and their relatives to travel to India was approved on priority.
The family travelled by road to Netaji Subhas Chandra Bose International Airport, Kolkata, and arrived in Mumbai on April 2. Not only were the tickets arranged, but senior officers of Air India were present at both Kolkata and Mumbai airports to arrange hassle-free travel by arranging wheelchairs and other medical help.
The three youngsters, who were wheelchair-borne and had started to lose mobility of the limbs, 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 that the three patients will be discharged next week and will return for a follow-up next year.
“They [doctors and Indian government machinery] are God’s gift to us. I will remain indebted to the Indian government all my life for saving my children,” Hossen told HT. “I was left with no option but to tell the doctors to euthanise my children. It is the most painful thing I have ever had to say, but it is only fair that if I am responsible for their ill-health, it is I who should set them free,” he said.
“India gave my sons and grandson a new life, something which our doctors or system failed to do,” said Hossen.