The Telegraph
Tuesday , March 4 , 2014
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More than board exam, a true test of life
Muscles fail, not his will

Seventeen-year-old Hafiz Ahmed stepped out of his home for the first time in two years wearing his school uniform: to write the ICSE exam on Monday.

The student of Seventh Day Adventist School, who suffers from muscular dystrophy, had not attended a single class for the past two years because it was physically impossible for him to negotiate the ramshackle staircase to his fourth-floor house in Rammohan Bera Lane in Park Circus.

His biggest concern on Monday was to reach the Park Street school to write the board exam.

“I was nervous. Will I be able to travel the distance? The exam was a secondary concern. I have to get there first… to write,” he said after completing his first paper.

This genetic disease makes a person’s muscular mass irregular in thickness. The muscles become weak and hamper locomotion.

Hafiz can’t uncap his pen but that didn’t stop him from completing his English paper right on time, without help.

At 9am, attendants of an ambulance put him on a chair and brought him down the family’s rented house. He was stretchered into the van and taken to the exam hall.

“It is difficult to make him sit without support in a four-wheeler. Even a little road bump can make him fall,” said mother Ismat who accompanied him in the ambulance while his father followed on a bike.

“There are so many new buildings,” he told his mother, marvelling at the changes the city has undergone while he was confined to his home. His window to the outside world has been the one in his room and the television set.

Hafiz was diagnosed with muscular dystrophy when he was two. The disease is detected in childhood and adolescence.

He could attend classes in school till Class VII but gradually the disease started taking its toll. He lost the ability to walk and had to be carried around. Still he was determined to continue his studies and the school allowed him to write his exams from home.

Mother Ismat would fetch him class notes from teachers and friends. Hafiz tackled the tests from his bed while a teacher from the school kept vigil.

He had requested the school to allow him to write his board exams from home but the council shot it down. Instead, it gave him permission to write from a hospital.

“Hospital stay costs a lot of money… he would have to be admitted for over a fortnight in a cabin. That’s beyond our means. So we decided to bring him to school for his exams,” Ismat said.

The family feared for Hafiz: what if the journey worsens his condition? To clear all doubts, Ismat consulted his doctor and returned with good news. If the school is not far, he can make the trip.

The next step was to take him to his maternal grandmother’s first-floor flat in Picnic Garden after the first exam. The building has an elevator, a big boon for the kid. He will be staying there until the exams are over.

He reached school at 10am and sat on a chair for three hours, a Herculean task for the young hero.

The school had made arrangements for him to write his papers in a separate room, principal Ashok K. Gill said.

Headmaster Rajveer Singh said: “Every child has the right to education and we tried to help him with that.”

Hafiz ignored the pain and sipped only a bit of water during his marathon effort, lest he need to use the washroom. “He can’t go on his own. Someone would have to carry him and he didn’t want to trouble anyone in school,” Ismat said.

“Muscular dystrophy mostly affects shoulder and hip muscles. It’s a progressive disease and is usually diagnosed by muscle biopsy and electromyography. One needs various enzymatic studies in the biopsies and to look for degeneration of muscle cells,” said neurosurgeon L.N. Tripathi.