Deepto Roy, a corporate lawyer, and an avid reader who loves both fiction and non-fiction reviews the book on Muthu Krishnan, who has a rare genetic disorder Spinal Muscular Atrophy. Tahira Tahir, a SMA parent advocate who also edited the book, shares her perspective as well.
Prapoorna Kiran’s “Voyager on Wheels: An honest story of a digital explorer” about Muthu Krishnan is a quite remarkable story of courage and determination to achieve in face of physical adversity. The protagonist, Muthu, has a rare genetic disorder called Spinal Muscular Atrophy (SMA). SMA causes weakness and wastage of the skeletal muscles of the body. The cause of this is the loss of motor neurons that control muscle movement. Muthu’s ailment is called Type II SMA, a disease that permanently impairs mobility and reduces life expectancy. More unfortunately, there are few treatments and cures, most of which are not available in India, or financially not within the reach of a normal income family.
Consequently, Muthu was never able to walk on his own, and was confined to be carried or move in a wheelchair. Despite this he shows enormous courage and innovation. His disease, which also frequently resulted in painful bouts of hospitalization cannot suppress his spirit, immense desire to learn, his ability to communicate and his inventiveness. His keen interest in technology and his willingness to back himself to unleash his creativity allows him to achieve many things at a very young age.
In many ways, his is a story of mind over matter, and his successes, through sheer hard work, and most importantly a great belief in himself, shows that despite a major ailment, one can strive to achieve and shine.
Equally, Voyager is also the story of Muthu’s family, who wrap him in layers of love and care, and unflinchingly supports him and keeps him safe, at what, one can only surmise, is great personal and financial cost. His father Adaikkalavan, his devoted mother Vallikkanna and his loyal sister Soundarya, who in a sense devoted their entire lives to Muthu’s well-being. Not just that, he always had loyal friends who supported him, mentors and seniors who unflinchingly held out a helping hand, tutors who went out of their way.
Therefore, the story is as much a celebration of Muthu himself, as the spirit of camaraderie and community that is the greatness of humanity itself. Nothing embodies, “when there is a will, there is a way” than this inspiring story.
Tahira Tahir, Passionate Parent Advocate for Access to SMA treatment who also edited the book, shares her perspective:
The tumultuous journey of life is largely defined by the few mystical moments and the few salient people that make it worth living. These moments and people, no matter how old life gets, give you a sense of contentment and relief along with keeping you humbled.
One such person in my life is Muthu Krishnan. Muthu is one of those rare people who make a mark on your heart effortlessly. You will find it hard not to adore him and look up to him at the same time. To achieve so much, yet remain humble, is no easy job but Muthu does it amazingly.
To be trusted by someone you have never met, for something you have never done before, is inconceivable for most of us and so was it for me when Muthu called me and asked me to edit his narrative. My writing skills were limited to a few amateur blogs while my reading skills were in a paused state. I didn’t want to say no to Muthu yet doubted if I was the right person to edit his book. This book was not just a book for him, it was his life which he had decided to share with the world. Needless to say, I was hesitant, but Muthu with his exceptional charm and extraordinary focus managed to convince me.
My next few days were spent in reading a mesmerising story of optimism, courage, resilience and determination to say the least. I was as engrossed as a person who doesn’t know Muthu would be. To do justice to this book while editing it was going to be difficult but I knew it would certainly be worth it. And there I was, doing something I had never done before, for someone I had never met, just so we could tell people a story they had never read and that would perhaps make a difference to a lot of people we would probably never see.
If you are as hesitant as I was, you can be rest assured you’re going to be as engrossed as I was while reading the amazing story of a boy who believed in himself against all odds and gave adversities a tough fight. When life gave him lemons, he not only made lemonade, but is wholeheartedly ready to share this lemonade with you, so you better drink it.
Grab a copy of “Voyager on Wheels” to get your dose of motivation, inspiration, optimism.
