Admissions to normal schools was a Herculean task as school authorities would demotivate and instead advise us to admit him in special schools. My husband’s regular transfers added to our woes. With great difficulty, we would get him admitted to a school and within a few years, we had to change his school because of a transfer. None of the schools were disabled friendly and we had to face both structural and attitudinal barriers. Well educated teachers are no different from uneducated people and we confronted many bitter experiences in different schools across India. But, with his academic success, we could see a big change in their attitude and later had become more friendly towards him.
As a young child, Pratyush was always delighted to see a computer. This made us enroll him in computer courses as early as 5 years of age. He took like a fish to water. Then he joined an NIIT course at 7 years of age where he learned SQL and Java. Observing his progress, we enrolled him for Microsoft certification courses. He successfully completed them and became the youngest Microsoft Certified Solution Developer (MCSD) in the world at the age of 9 years. In the following summer, he did a one-month internship at a software company called Mastek. As academic pressures increased, he shifted his focus to school wherein he constantly excelled in academic and extracurricular activities. His hard work, focus, and dedication with continued perseverance brought him a lot of awards and recognition at the national and international level. People started looking beyond his disability and regarded him on par with normal students. He did his Master’s in Computer Science from Columbia University after finishing his undergraduate study in Computer Science and Engineering from IIT Bombay. He has evolved into a young, cheerful, confident, and empathetic person.
Genetic disorders impact not only the physical health, but also the psychological and social well-being of the kids and their families. We lived one day at a time, concentrating on the present and not dwelling in the past or worrying too much about the future. If there is one thing I have learned in this journey, it is to fight for what is right and what I believe in. When we can’t change the circumstances, we need to adapt to the situation in the best possible way and keep moving forward.
At present, we have three US Food and Drug Administration (FDA) approved drugs for the treatment of all forms of SMA.
Spinraza (nusinersen) by Biogen is the first medication approved by the US FDA. The cost of the drug is beyond anybody’s reach. The other drugs approved are Zolgensma by Novartis and Risdiplam by Roche. Unfortunately, no drug is available in India and the SMA community is facing enormous challenges. I sincerely request the Government of India to bring the available medicines to our country and save the precious lives of our children.
At the end, I would like to say anyone who loses all hope and thinks this is the end should understand that it is just a bend, not the end and have faith in God.
“My child is not a statistic, not a number, not a diagnosis, but a human being with different abilities taking on a difficult world. He proves every day that he is a miracle and that he will never give up. I am his voice and he is my heart.”
