Giving birth to a new life is an amazing experience. It is the beginning of a great adventure full of surprises and twists and brings a great responsibility. When our son was born, he became the center of our very existence.
We named him ‘Pratyush’, meaning early morning sunlight. Time flies and soon he was a one year old. All his milestones have been normal. He started walking with support and we were waiting for that magical moment when he would take his first independent steps. Days became months and there were no signs of him being able to stand on his own. This made us worried and the first visit to the pediatrician began which slowly led us to more specialized doctors such as orthopedicians and neurologists. After a series of tests and a muscle biopsy came the devastating and shocking news that he is affected by the genetic disorder called “Spinal Muscular Atrophy”. Our world came shattering down. We could only understand that he will be immobile for life. Doctors could not tell us either the prognosis of the disease or life expectancy of the child. The awareness levels even among the doctors was extremely low. There was no Google to search on or other parents with similar kids who could share their experiences.