Rays of hope for Meherpur family

When Tofazzel Hossain wrote to Meherpur deputy commissioner a couple of weeks ago asking the civil servant to either bear the treatment cost of his terminally ill sons and a grandson or have them euthanized, he had no other options. But his emotional appeal to save his two sons and a grandson had not fallen on deaf ears, as an Indian hospital has now come forward to treat them free of cost.

The NeuroGen Brain and Spine Institute, a hospital in Mumbai, India, said it would bear the expenses related to the treatment and travel for the three Meherpur patients.

The institute has contacted Nur Khan Liton, acting executive director of rights body Ain o Salish Kendra, and Nur Khan already spoke with Tofazzel on February 2.

“He [Tofazzel] sent me the copies of their prescriptions and documents via email on Saturday, and I have already forwarded those to the hospital,” Nur said, adding, “The officials of the institute will hold a teleconference with the family members and me within a few days to settle all issues.”

Fifty-five-year-old Tofazzel, who runs a grocery shop in Meherpur town, has already lost everything in his desperate 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 and he cannot bear their medical expenses anymore.

On January 19, Tofazzel wrote to the deputy commissioner in the district, requesting him either to give permission to have the three euthanised or take the responsibility for their treatment.

Muscular dystrophies are 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.

Sabur showed symptoms when he was just 11 and a class-IV student. Raihanul had it at five. Sourav got it three years ago.

Tofazzel took Sabur to India for treatment but the physicians there told him the disease was not curable. Some doctors at the National Institute of Homeopathy in India said the disease is partially treatable, he said.

Sabur is now fully paralysed while Raihanul and Sourav may face the same fate, Tofazzel wrote in the letter. Such a stress rendered his wife Shirina Begum mentally imbalanced, he added.

After his letter, the district administration and the local municipality mayor gave him Tk 50,000. The three were given the government allowance for the disabled. However, the financial help is not enough for their treatment.

Tofazzal's appeal hogged headlines of local and international media. UK-based newspaper The Guardian ran an AFP's report on the issue which drew attention of the officials of the institute.

“They contacted me via email and phone as I commented in the report and requested me to help them reach out to this family,” Nur said.

Nur said Avantika Patil, an official of the hospital, wrote him that they offer a ray of hope to such families through their unique combination of stem cell therapy and neurorehabilitation 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 to him.

“We want them to know that there is always hope and they do not need to go to the horrifying extremes of mercy killing. We will do all we can with a little help from you,” Avantika wrote.

Nur Khan said, “It's commendable that an Indian hospital comes forward for this noble cause. But we as well as the government should do something for the family.”

Contacted, Tofazzal told The Daily Star that Nur Khan informed him about the offer.

“I am ready to go anywhere for my children,” he said, adding that one local journalist told him that a Chinese team, now visiting Dhaka, could also help.

“I am going to Dhaka tomorrow [Sunday] to meet them,” he added.