The indomitable Nihal Bitla, the prominent face of progeria in India and arguably one of actor Aamir Khan's biggest fans, has passed away at a hospital in Telangana at the age of 15. He was diagnosed at the age of one and since then has campaigned to dispel misunderstandings about the rare condition and help other patients living in the shadow.
Bitla's bucket list included a trip to Disneyland, seeing the Honda Asimo Robot, and meeting Khan. One of his wishes was fulfilled when the boy met Khan, whose film ‘Taare Zameen Par’, based on a child with learning difficulties, was a big inspiration in his life.
"Nihal, your contagious smile, positive attitude, inspiring chats, optimistic outlook will give us strength for years to come. You have left us behind with heavy hearts for a higher place, Rest in peace our dear friend. Our thoughts and condolences with family and friends," Team Nihal, the Facebook page that manages the progeria campaign, posted last night.
Team Nihal functions under the aegis of the Progeria Research Foundation that creates awareness on progeria in India.
Nihal and his family had gone to Telangana to attend a wedding. Dehydration is being suspected as a cause of his sudden death, a report in the Hindustan Times stated.
"He appeared like a 60-year-old when he was just 10,” Dr Parag Tamhankar from the National Institute for Research in Reproductive Health, who had diagnosed Nihal with progeria, was quoted by the paper as saying.
In an emotional post for the Facebook page Humans of Bombay, Nihal spoke about his condition -- still shrouded in mystery in India due to its rare occurrence and lack of public information.
"My parents found out I had progeria when I was 1 year old, but they continued to give me a normal lifestyle. Like any other child, I went to school everyday, played with my classmates and did my homework. When I was in the 4th standard and the movie Paa released, my classmates began teasing me and calling me Auro -- I felt terrible at that point, so I came home and told my parents. My dad told me to tell them 'to chill' and that 'i'm special' - so I did. I don't blame those who don't understand me, they like me are children after all," Bitla told the Humans of Bombay.
"I am sure you will help spread the word for the Progeria Research Foundation to identify 60 more kids like me in India so that they can get the right treatment," he told Khan. It is suspected that at least 60 children in India live with progeria.
The Indian Express reported that Nihal's family is aiding the parents of a 3-year-old progeria-affected child Aditya Sahu.
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