P S SUNDAR'S ARTICLE ON HIS SON -- 4

WHEN MEDICINE IS YET TO PROVIDE AN ANSWER 

BY P.S. SUNDAR. 

Around this time last year, Dr Pier Lorenzo Puri of Sanford Burnham Medical Research Institute, USA, pleased lakhs of patients suffering from the incurable muscular dystrophy (MD) with the message that his team has come out with a finding bearing potential treatment for MD.

MD patients suffer from debilitating muscle wastage and many die in teenage. Dr Puri’s research figured out technical ways to keep the muscle stem pool fresh and ready to regenerate the wasting muscle. Dr Puri was quoted to say, “Our mission is to improve the lives of patients and extend their lives until they can benefit from a cure 20 years from now”. Ever since then, Sanford’s blog, Beaker, has been posting of responses from patients and parents anxiously enquiring when they can get the benefit. Dr Puri, who is credited to have worked with many MD patients, is very understanding and caring when he says, “There is an emotional charge in my lab. We know there are many children waiting for us to do our job and when we work, we are targeting those faces, those smiles”. 

Substantial number of enquiries in the blog has come from Indians. Due to bureaucratic indifference, there is no official statistics relating to MD patients in India. So much so, some quarters are urging Government to identify and include MD patients in the country’s census – vital information required to create a better living ambience for these terminally-ill patients. Of late, some organisations are creating awareness and providing possible guidance to MD patients. Only this year, Government has included MD in the draft of the new law on disability. 

Until eight years ago, I was also anxiously searching for information to save my only son 
Vignesh who was suffering from MD. As he was confined to wheelchair and my wife, Shyamala, was taking care of his requirements, I was doing the running in many countries looking for some light in the tunnel. That was when I came across a US experimental study claiming to repair wasting muscles with a shot of powerful injection whose landed cost in India would be prohibitively expensive. Shyamala and I even volunteered to offer Vignesh for experiment-testing but even before mentionable progress could be made, MD snatched him away from us three days before Diwali – on Oct 21, 2003. He was 15 years young studying in XII class (Plus Two). We have no news about advanced research to this injection. 

When doctors diagnosed nine-year-young Vignesh as suffering from MD, they said that it was a rare disorder although there were many types. I could also see only one case but the parents gave up. Shyamala and I decided not to have another child as Vignesh was not a rotten brinjal to be replaced but to shower undivided attention to help him contribute significantly during his short life with us. Now, we are orphaned as MD has consumed him but we feel satisfied to have done our best. And, MD has taught us a new meaning for life of converting disabled into differently-abled when medicine is yet to provide an answer. 

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