Sharayu: If I had to share my experiences with another parent who has a disabled child, I would only say, don’t feel sad. God has sent you this child because he deemed you capable. Most people have to do tapa to find God. It is not an easy job but if you are successful, it’s the biggest satisfaction you’ll ever have in your life. A very important thing is to be his/her friend too. If a handicapped child finds a friend, it’s a big thing. Most of the time, it is tough. So no matter how tiring your job, you must make a lot of time as you would with a friend. When Prasad was in school, I came back every day and he told me about the day he’d had. And even ask me if what he’d said or done that day was right. So because your child doesn’t have too much contact with the outside world, it’s very important that you’re there to guide him/her.

Nagesh: I would tell parents one thing – don’t lose courage. Learn to work with whatever you’ve got. And never give up hope. Doctors and medical help are very important but too much of it in your child’s life will cause trauma.

Don’t get overly emotional about the situation. People used to approach us, come home and cite medicines and emotionally blackmail us. At such times, most parents are susceptible to their wiles – all they want is for their child to walk, but I’d say be careful of people taking advantage of your crisis. I would advise parents to admit their kids to a special school because not only are they equipped for children with disabilities, but they also offer physiotherapy.

If you are a parent of an SMA child, you have to you need to give a lot of your time. We have always put him first, before our career. At work, our bosses were kind and adjusted our timings, knowing that we two were the only people looking after Prasad. The most important thing is – give a lot of attention. Most SMA affected kids are talented in some form or the other. Look for it, encourage them.

When we were bringing up Prasad, there were no examples for us to follow. Today, other people read about Prasad and sometimes even ask us for guidance. The other day, two children who have SMA called and told us they had decided to go ahead and finish their education till the 10th standard after reading about Prasad. We are happy we are making a positive difference in society and touching the lives of people like us.