Meherpur family with rare disease leaves for India today
The Meherpur family, which drew huge public attention after writing a letter to the district's deputy commissioner in January asking the civil servant to either bear the treatment cost of three terminally ill members of the family or have them euthanized, goes to India today for treatment.
In February, the NeuroGen Brain and Spine Institute, a hospital in Mumbai, India, said it would bear the treatment and travel expenses for the three Meherpur patients. Later, Air India volunteered to foot their travel cost.
And after completing all other formalities, the family will leave for India this morning, Nur Khan Liton, former director of Ain o Salish Kendra, who has been working as liaison between the hospital and patients' family, told The Daily Star yesterday.
Six family members of Tofazzel Hossain will leave their Meherpur house around 7:00am and will reach Gede-Darshana border on a microbus provided by the Meherpur DC office, Nur Khan said. From the border, they will go to Netaji Subhash Chandra Bose International Airport on another vehicle hired by some of Tofazzel's well-wishers in Bangladesh, he added. Then they will fly to Mumbai by Air India.
Fifty-five-year-old Tofazzel, who runs a grocery shop in Meherpur town, has already lost everything in his attempt to save his sons Sabur Hossain, 24, Raihanul Hossain, 13, and grandson Sourav Hossain, 8. The three have been suffering from a rare disease, muscular dystrophy, for years.
Muscular dystrophy is a group of genetic conditions characterised by progressive muscle weakness and loss of muscle mass. The symptoms mainly begin in childhood. The victims, in most cases, lose the ability to walk. Some may have trouble breathing or swallowing.
On January 19, Tofazzel wrote to the Meherpur deputy commissioner requesting him either to give permission to have the three euthanized or take the responsibility for their treatment.
Tofazzal's appeal hogged headlines of local and international media. UK-based newspaper The Guardian ran an AFP report on the issue which drew attention of the officials at the NeuroGen Brain and Spine Institute.
The institute authorities contacted Nur Khan via email and phone seeing his name as a commentator in the Guardian story, and requested him (Khan) to help them reach out to the family. Nur Khan then helped establish the link between the institute and the family and complete other formalities.
Avantika Patil, an official at the hospital, wrote to Nur Khan that they offer a ray of hope to such families through their unique combination of stem cell therapy and neuro-rehabilitation for incurable neurological disorders. “This is a noble cause and I believe that together we can make a difference in the lives of these children. We will arrange for their free treatment and travel,” Nur Khan quoted from Avantika's message.
Contacted, Tofazzal told The Daily Star yesterday, “I feel very happy now. Only Allah knows they will be cured or not but I'm happy that at least they will get treatment.”
Nur Khan said it was commendable that an Indian hospital came forward for this noble cause. “But we as well as the government should do something for the family.”
Any financial help can be sent to the family through Tofazzel's bank account -- Tofazzel Hossain, Savings Account No: 1177, Islami Bank Bangladesh Limited, Meherpur Branch, he said.
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