Battling a Killer Within

During my first day of social work (photography Classes) for the blind children of Arushi in Bhopal in 2003, I met two lovely looking kids who were brothers. One was rolled into the class room on his wheel chair as his younger brother was gleefully walking behind him waving to his weekend activity mates. After the class I walked up to them and started to chat only to listen to their sordid story and how they are facing death and also challenging it through their grit with which any child would not do with ease. I visited them at their home and spoke to them at length. This story was written keeping in mind that they would get help and they did for sure, from multitude of readers who called me up the next day asking for their address.
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Brothers Deep and Akash are unfazed by the special care they are getting from everyone around them. The two shy children paint and play on a computer at a social organization regularly, while their grandparents wait on them. The special care could be short-lived, especially for 10 year old Deep, who experiences an advance stage of Muscular dystropy.
Deep can no longer stand and needs help even to change his position while sitting. This wasn't the case till five years ago. Deep was born normal and played about like any other little boy in the neighbourhood. ‘But then gradually, his walk changed and he began walking on his toes. Some neighbours with whom we had worked brought this to our notice and that’s when we got him tested. Deep was diagnosed with muscular dystropy, that causes degeneration of muscles. Then, Irish physiotherapist Edwina Carney, who worked with us for two years, confirmed the diagnosis,’ says Namita Gite, a volunteer with Arushi, a social organization working for physically challenged children.
Deep also went to a neighbourhood school in Panchsheel Nagar where he lives. ‘But he had to discontinue the academic session as he can no longer walk,’ says his grandmother. ‘We’ve have been to so many doctors, masseurs. We even tried witchcraft in the Kumbh Mela at Ujjain last year and approached every body with a possible cure.’ But things haven’t improved. Deep’s grandfather says hopefully, ‘if he just begins to stand up on his feet, he’ll be able to walk again.’ Gite says, ‘either the doctors they visited didn’t tell them properly or they didn’t understand what they were told. The doctors keep prescribing tonics and other medicines, but it is misleading as nothing would help.’

Confirms oncologist Dr Shyam Agrawal, 'there are eight-nine types of muscular dystropy and all are incurable. No diet or special supplements can help prevent the gradual and progressive weakness of the muscles, especially the girdle muscles which are first affected.’
Younger brother, Akash, can still walk and run but the disease has hit him too. Though the grandparents are still ‘suspecting,’ Gite confirms that he too is afflicted.
The medicine part of the story reaches a dead end here. Says Dr Agrawal, ‘gene therapy is still being worked upon in the West but India has a long way to go.’
The human tragedy has however just begun. Ever since the condition of the eldest son Deep began deteriorating, the mother of four children (Deep and Akash have a brother and sister too) has begun to keep ill frequently. The father, a paan-stall owner, had lost his kiosk almost three months ago. The family is dependent only on grandfather’s merger earnings.

What is muscular Dystropy?

Muscular dystropies are genetic diseases characterised by progressive weakness and degeneration of the skeletal muscles which control movement. Among the many forms of muscular dystropy, some noticeable at birth (congenital muscular dystropy), other s in adolesence (Becker MD), the three most common types are Duchenne, facioscapulohumeral, and myotonic. Each differs from the other in terms of pattern of inheritance, age of onset, rate of progression, and distribution of weakness.
Duchenne muscular dystropy primarily affects boys caused by mutations in the gene that regulates dystrophin - a protein involved in maintaining the intergrity of muscle fibre. Onset is between 3-5 years and progresses rapidly. Most boys become unable to walk at 12, and by 20 need a respirator to breathe.