Progeria has left 14-year-old Ali Hussain with the body of a 110-year-old. The condition, which affects about 80 people in the world, causes an eight-fold acceleration of the body’s aging process and significantly increases the risk of heart disease, arthritis, and eye problems. Although the disease has already killed five of his siblings, Ali has not given up hope, and intends to make the most of the few years he has left.
“I very much want to live and I hope there is medicine for my condition out there. I’m not scared of death but my parents have suffered a lot,” he said, speaking to the Daily Mail. “I’d love to live much longer for them. I don’t want to burden them with any more pain.”
Ali’s parents, Nabi and Razia, are first cousins, wed by arrangement 32 years ago. Of the eight children they have had together, two sons and three sisters have died from the condition that’s currently killing their remaining son. But due to the extremely rare nature of the disorder, Ali has had to wait 10 years for a proper diagnosis.
“We never heard of the word Progeria, the doctors never mentioned it. They were stabbing in the dark; they were as clueless as us,” said Nabi. “If a doctor had perhaps told us that our children were suffering with some kind of genetic problem and we were connected we would’ve stopped having children. But nothing was said.”
Following the diagnosis, Ali and his parents were introduced to SB Devi Charity, a Kolkata-based charity organization. The charity helps the family pay for Ali’s costly medical needs. For Nabi and Razia, who otherwise subsist on the $30 a month Nabi earns as a gatekeeper, the financial help is crucial.
“It’s very lonely living this life, especially since my siblings have gone,” Ali said. “I don’t know if there’s anyone else like me. I’d like to be in the company of other people like me again. And I know my brother would be proud of me for doing so.”