Saumit Sah (9) knows he is unwell. Much against his wishes, he goes for physiotherapy sessions with mother Sapna, every evening, with the hope that he will be able to run like other children.
Saumit suffers from a genetic muscular disorder named Duchenne Muscular Dystrophy (DMD). It is a slow progressing disorder that weakens the muscles that help the body move.
“DMD is caused by the absence of dystrophin protein in the body. This protein helps muscle cells maintain their shape and strength. Without it, muscles break down and a person gradually becomes weaker,” said Dr Sumit Singh, associate professor, department of neurology at All India Institute of Medical Sciences (AIIMS).
Apparently, DMD affects only boys. “There is no recorded data but consensus on MD (muscular dystrophy) suggests one in 3,500 boys suffers from DMD,” he said.
DMD symptoms start surfacing as early as two years, according to Dr Gourie Devi, emeritus professor at Institute of Human Behaviour and Allied Sciences and consultant neurologist at Gangaram Hospital.
“By the time the boy is 10-12 years old, he needs to use a wheelchair. By this age the child also develops a curvature of the spine and tightness in their joints. Most suffer from respiratory problems and some also have cardiac problems,” she said.
Saumit has reached this stage.
“Earlier, DMD patients did not survive beyond their late teens but thanks to modern day physiotherapy and certain new drugs, life is possible till 30-40s. But they are bedridden,” Dr Devi said.
Saumit’s parents are mentally prepared for disaster but haven’t given up their fight.
“It is an unequal battle. We are fighting to win but don’t know how,” said Amitava, his father.
“There is so little information we have available and no awareness. I know of so many cases, where helpless parents resign their kids to fate as there is no cure.”
Manish Agarwal (12) also suffers from DMD. His disease is at a slightly advanced stage. He also has problems in his hand movements and walks with a wobble.
Manish’s parents say he has suddenly become very reserved.
“The last two years have been particularly traumatic for him. While we have just learnt to take his deterioration in our stride, he has not been able to come to terms with it,” said Poonam, his mother.
Manav Chawla (10) is comparatively fitter as the disease is yet to take its toll on him. “I don’t know what the fuss is about. I just have fat calves but I am fine,” he said.
“I don’t know if he is really strong or he just pretends to keep us in high spirits,” his mother Pooja said.