Q When was the disease detected?
A Earlier, my family thought it was a skin disease. Several doctors were consulted; they said its genetic and there was no treatment. But four years ago, Dr Parag Thamankar, the divisional head at the Parel-based Genetic Research Centre, National Institute for Research in Reproductive Health, diagnosed that I suffered from the progeria. Doctors then started searching for treatment because I was the only child at that time identified with the disease. Although late, I am on right treatment.
Q Did Boston-based Progeria Research Foundation help?
A Currently, there is no proper treatment available across the world. This is the only foundation that is working on the drugs. With the help of Dr Thamankar, I was sent to this foundation where I spent a month and received treatment. According to PRF, there must be at least 60 more children in India suffering from the condition. The foundation now aims to reach out to all of them and provide them with diagnosis, medical recommendations and research-based treatment. Ater the treatment, my movements are more flexible.
Q Your experience in Boston?
A The doctors were very co-operative. Apart from the treatment, I got to roam around the city. People did not stare at me when I walked in the parks, let alone teasing me. That environment gave me confidence to walk freely on roads. When I came back to India I decided not wear a cap. But when I landed in Mumbai airport and tried to catch a rickshaw, the driver started staring me and I immediately put my cap on.
Q What's your daily routine?
A It's normal. The only issue is that I can't go out of the house as people stare at me and tease me. I liked going to school but after class 4 I could not continue as my health deteriorated. Now, I just sit at home playing games on the computer. I want to become painter; I painted some canvasses. I like to go to malls whenever I visit the hospital for my treatment. I would like to meet actor Amir Khan, he is my favourite hero. I like his movie 'Tare Zameen Par'.
Q Tell me about your documentary?
A This documentary is basically about my journey and the Boston foundation's appeal about finding the 60 children like me in India. This documentary has been made by Mediamedia Communication in association with PRF.
