India’s first-ever ‘Progeria Kids Meet’ was organised in Mumbai to create aware about this rare genetic disorder. The meet was a unique get together of three progeria heroes-Prachi, a five-year-old girl from Patna, Aaditya, a five-year-old boy from Raipur and Nihaal, a 14-year-old boy from Bhivandi. The meet was held at Kidzania, Mumbai and organised for the kids and their parents to get to know other kids with the same condition as them and bring them together due to their common circumstances.
Progeria also called as the Hutchinson-Gilford syndrome is a rare genetic disorder which affects one in eight million children. Symptoms of this disease include very early ageing and these children live only up to teenage or early twenties. early symptoms include insufficient weight gain, scleroderma-like skin condition, complete hair loss. Another peculiar feature of this disease is small round head with a recessed jaw and a pinched nose. As these children grow, other signs and symptoms start manifesting like heart disease, kidney failure, wrinkled skin and loss of eyesight. Patients also have a small fragile body like an elderly person along with a large head in comparison to the body. scalp veins also become very prominent. Read: Suffering from uncommon diseases, do not lose hope!
The progeria meet gave these children an unique opportunity to enjoy themselves and live a normal life. It also aimed to create awareness about the disease and help these kids and their parents to learn from each other’s experience. The meet was organised with the help of Progeria Research Foundation, USA. The foundation estimates that are 60 children with progeria in India that are yet to be identified and it aims to make the latest treatment available to them for free.
The progeria research foundation has helped Nihal and Ishaan who have already availed their treatment at Boston, Massachusetts. Prachi will be travelling to Boston today, on 25th November 2015 for availing the treatment.