Nihal Shrinivas Bitla, a Mumbai teenager who had been suffering from Progeria, has died. Nihal was diagnosed with the condition as a child, but has finally succumbed to the disease at the age of just 15 at a hospital in Karimnagar in Telangana on Tuesday.
His parents had travelled with him from their home in Bhiwandi to Telangana to attend a wedding when he took ill and was taken to a local hospital, where doctors believe that hardened arteries, which are a typical problem in old people, were a possible reason for his sudden death.
Bitla came into the limelight after he met Bollywood actor Aamir Khan in December after the Facebook page “Humans of Bombay” highlighted his story and the fact that he was a “super fan” of the star.
During his short life, he campaigned tirelessly for more funding into researching the condition and was the face of the Progeria Research Foundation’s campaign. He made headlines trying to locate 60 other Indian suffering from Progeria, to participate in a clinical trial in Boston with him.
One of his doctors, Dr Parag Tamhankar from the National Institute for Research in Reproductive Health, said that when he was 10 he already had the body of a 60-year-old.
Progeria, or Hutchinson-Gilford syndrom, is a rare genetic disease that causes the body to age eight times faster than normal. This genetic disease occurs when there is a mistake in a certain gene causing it to make an abnormal protein. When cells use this protein, called progerin, they break down more easily. Progerin builds up in many cells of children with Progeria, causing them to grow old quickly.
Most children with Progeria do not live past the age of 13. The disease is not inherited, or passed down in families and affects both sexes and all races equally. It affects about 1 in every 4 million births worldwide. In 2009, only 56 children were diagnosed with Progeria around the world, but now 125 children have been found.