It was just few months’ back we lost a sweet and typical 13 year old boy named Shiva. He was living with Duchenne Muscular Dystrophy, a cruel and unforgiving muscle wasting disease that will cut short one’s life if a treatment does not come in time. Actually there is no proper cure for DMD. Like 35% of cases, Shiva DID NOT inherit DMD, it is because of his body's own spontaneous mutation that he suffered from DMD.He was the boy with full of intelligence and determination. He used to be one of the top scorer in the class. He was better in understanding the purpose of life than other guys of similar age.
The words he used to say often was “There is no limit for dreaming.”
"Jab Sapne hi dekhna ho toh bada dekho na.. Sapne dekhne me kya jata hai..??"
And his principles were “When it is about dreaming then don’t get scared to dream too high. You are not going to lose anything but, by doing so, you are increasing your scope”. And when it comes about charity he used to be the first to help used to criticize the people not believing in charity.
“Help others and you will get them back for sure.”
He never dreamt low. It used to surprise everyone around him that a boy of thirteen year had so much to dream about his life.
He is no longer with us but he left behind his principles for us to live with. On his name ShivaDMD Health and Education Trust was started.
Then Recently we met a boy named Shivam. Shivam could be described as your typical sixteen year old boy. Shivam is a ticking time bomb as he was recently diagnosed with DMD. He loves playing cricket and he is one of the biggest fans of Sachin Tendulkar. He even has a bat signed by Sachin Tendulkar and inspires to meet Sachin ONE DAY VERY SOON. He loves other sports as well and wait till early morning to watch FIFA or Olympic in TV.
He is a popular member of his class at school, where he excels at reading, mathematics, art and computers. He used to spent spends his playtimes doing his best to keep up with his friends but he is becoming physically weak because of which he feels like he is losing his friends slowly. He loves playing Computer Games and these days he is more into it and watching sports. Shivam is fascinated with other countries, the people, and their way of life. He follows news more than us and used to have in-depth thoughts about them.
He misses playing cricket these days, and his body is losing strengths. He no longer can count on his muscles and needs support to sit, walk, write or eat. He recently passed HSC with very good mark of 73%. I personally checked his mark sheet and found it very impressive. His Doctor feels that he no longer could study and sit in exams. He needs regular exercise and is being treated for DMD. Unfortunately, medical science has not discovered any effective treatment strategies against the disease that is slowly destroying the muscles in his body. It is said that he will eventually lose the ability to walk followed by the ability to breathe. His heart will slowly lose its ability to function. At this moment in time, there is little that anyone can do about it. Sometimes a little improvement in him after stem cells, each injection costing 2 lakhs Rs, gives us hope that he would be able to play like his friends very soon. But everything looks dark when his doctor says If there are no significant research advances made soon or may be if not given a proper treatment, Shivam will face certain death .
As his mother with a big hope in her thinks that in future she could see Shivam finishing his studies and backpacking around the world. She dreams him commencing a creative career dedicated to his work, just as dedicated to his play.
Our dream for Shivam is to have a long, happy, and fulfilling life in relative health so that he is here with us to fulfill his dreams. WE have already lost enough children because of DMD and we don’t want to lose more. We have been working on it and for the dreams of every other child and their parents who has got such incurable disease.
But it will take the help of people like you to see this dream come true. Visit www.shivadmd.org to help us end Duchenne Muscular Dystrophy.
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