Nihal, the face of progeria, dies at 15
Real-life Auro, Nihal Shrinivas Bitla, 15, who was diagnosed with progeria when he was 10, succumbed to his condition at a hospital in Karim Nagar in Telangana.
Nihal and his family, who reside in Bhiwandi, were in Telangana to attend a wedding, where he developed severe dehydration following which he was admitted to a local hospital. Nihal’s arteries hardened, a condition common among the elderly, which medics suspect could have led to his sudden death.
Dr Parag Tamhankar from the National Institute for Research in Reproductive Health had diagnosed Nihal with progeria. Nihal was brought to him with complaints of stiffness of bones and wrinkles on his face. “He appeared like a 60-year-old when he was just 10,” said Dr Tamhankar.
According to Dr Tamhankar, children with progeria generally appear normal at birth. “During the first year, they show symptoms of slow growth and hair loss. While there is no complete cure for this disease, with new drug treatment, the life expectancy of such children can be extended and the quality of life may improve,” he had told HT.
Nihal liked painting and even gifted one of his paintings to Bollywoood actor Aamir Khan, who met Nihal after he expressed his desire to meet the actor. Nihal had stopped going to school because of the immense stigma.
In 2014, Nihal along with Ishan, 3, another child with progeria from Satara had gone to Boston in the United States. There, they underwent a clinical trial to check the application of a cancer drug in slowing accelerated ageing among children with progeria.
Nihal was instrumental in creating awareness about Progeria in India. He was the face of the Progeria Research Foundation’s campaign to detect undiagnosed children with Progeria living in India
Under the aegis of Progeria Research Foundation, a unit called Team Nihal was formed to create awareness on Progeria in India. The foundation estimates at least 60 children in India have the condition, but, so far, only four, including Nihal, have been diagnosed
A campaign called #finding 60 in India is working towards finding these undetected cases in India
Nihal’s efforts were instrumental in detecting two more Progeria cases — Aditya, 5, from Rajasthan and Prachi, 5, from Patna
In 2009, only 56 children globally were diagnosed with Progeria, according to the foundation. However, following the foundation’s efforts, 125 children with Progeria have been identified