Film highlights plight of rare disease victims, their parents

A documentary highlighting the trauma and agony of the parents of young children in villages here suffering from a rare disease will be screened during the 'Delhi film festival' in the national capital tomorrow.
The 22-minute film "Need Indeed in Azamgarh" telling the story of victims of the muscular dystrophy disease in Barauli and Basupar villages here and Kopaganj township in neighbouring Mau district not only depicts their sufferings but also that of their parents, while making an appeal to society to lend a helping hand to them.
"The smaller the coffin, the heavier it is for the parents," the director of the documentary Hasan Haider, who is presently in Delhi, told PTI on phone.

The film is being produced by Z&Z Media.
"This documentary unfolds the misery of the parents who are witness to the slow death of their offsprings suffering from this rare ailment which attacks children, especially boys aged around four," he said.
The muscles of such a patient start dying as he grows and start drying up gradually, rendering the patient immobile leading to the premature death at the age of 18, Haider said, adding that effective cure to the disease is yet to be discovered.

There are several families in Azamgarh, Mau and Mirzapur districts of Uttar Pradesh which have such patients and in many cases, the same family with offsprings of the same set of parents are hit by it, he said.

Dr B S Rajput, who also features in the documentary, said the ray of hope for treatment of the disease is stem cell transplant but it is a very costly method.
"If the affluent class lends a helping hand in stem cell transplant, the victims of this dreaded disease could be saved," Dr Rajput said.
"We have tried to give a message to the society through this documentary that they can save these lives if they make an effort in this direction," Haider said.