By Haziq Qadri @haziq_qadri
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Videographer / Director: Rare Shot
Producer: Haziq Qadri, Ruby Coote
Editor: James Thorne
Shreyash Barmate, aged 11, who lives in Madhya Pradesh, India, has progeria – a condition which causes rapid aging in children.
The condition leaves Shreyash suffering from baldness, heavy wrinkles and weakened limbs. The Progeria Research Foundation believe the syndrome is so rare it affects around 1 in 20 million people.
The average life expectancy for children with progeria is 14, with many dying from a heart condition called arteriosclerosis, which usually affects adults over the age of 60.
But despite the challenges posed by the syndrome, Shreyash remains incredibly positive about his daily life and his future.
He said: “I play instruments, I sing and I ride a bicycle and drive a car. I go swimming as well.”
“I know I have a condition called Progeria but I am okay with it. It’s not coming in my way at all. This condition is not affecting my dream of becoming a singer.”
Shreyash has an older brother and a twin brother, neither of whom have the condition. While Progeria is caused by a genetic mutation, experts do not believe it is hereditary.
Shreyash’s dad Arvind Barmate, a government employee in Madhya Pradesh, says his son started developing marks all over his body when he was two.
Arvind said: “He has progeria but he never lets us feel that he has some disease. He always spends his time playing and singing.
“He wants to become a singer and he is actively taking part in singing. His condition is not stopping him at all.”
Doctor Girish Budhrani, the family’s paediatrician says that despite the rare medical condition, Shreyash is an energetic and positive boy.
He said: “This is the first time I’m seeing progeria as a patient. In total there are around 140 progeria patients and around 60 of them are in India.
“I see him as one of the most positive children in our society. If you go to normal children you will see they wouldn’t be as jovial as Shreyash.”
Shreyash spends his days playing cricket, painting, swimming and playing musical instruments.
He said: I go out with my brother and play cricket with him and other friends. We all play together. I have a lot of friends.
Shreyash is also proud that, despite his condition, he has not fallen prey to bullies.
He said: I know we can get bullied but all my friends respect me and play with me all the time. I have never been bullied by anyone.
“People say I am not a different kind of boy, I am like them. I am normal who wishes to achieve something good in life.”
Although Shreyash’s body shows signs of extreme ageing, he has the mental age of a regular 11-year-old. But his condition does require regular check-ups.
Dr Budhrani said: “Progeria is not curable. Shreyash needs a regular check up and we have to monitor his every single problem. He is a very active boy but at the same time he is having a rare medical condition so he needs to get checked every week.
“But he has a lot of talent. If you listen to his singing, he’s one of the most fabulous singers you’d ever come to know.”
Now, the ultra-positive 11-year-old is planning to focus on his singing.
Shreyash said: “I have stopped thinking about progeria.I want to become a singer when I grow up, and I am going to get famous as well.
“I play instruments and nobody can play better than I do. So I am very happy.”