Ali Hussain has a condition called Progeria and five of his siblings have died from the same condition. The condition is said to affect only just 80 people worldwide. Of the deceased are two of his brothers and three of his sisters. The condition causes rapid ageing and sufferers of the genetic disease are prone to arthritis, eye problems, heart disease and baldness.
“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. “I’d love to live much longer for them. I don’t want to burden them with any more pain.” People who suffer from the condition do not live beyond 14 years of age.
Ali’s parents Nabi Hussain Khan, 50, and Razia, 46, are first cousins and were the product of an arranged marriage 32 years ago. Their children Rehana, Iqramul, Gudiya and Rubina have all died from Progeria between the ages of 12 and 24. The fifth child, a boy who died within 24 hours of being born, is also thought to have had the rare condition.
Nabia and Razia have had eight children in total and have two healthy daughters – Sanjeeda, 20, who is married with two children of her own. Their youngest daughter Chanda, 10, also does not have Progeria.
Their first daughter, Rehana born in 1983 had the condition but since the disease is rare, some doctors do not even know about it. Their son Iqramul was born two years later with the same symptoms.
Ali’s father, Nabi works as a gatekeeper at a factory earning 2,000 rupees – or £20 – a month.”We never heard of the word Progeria, the doctors never mentioned it. They were stabbing in the dark; they were as clueless as us. 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,” he said.
Their children were diagnosed with Progeria in 1995 by a consultant in Kolkata finally. “The diagnosis didn’t help,” Nabi said. “People were sure there was a cure. No one in our community believed there was nothing that could be done. Neighbors and extended family tormented us for not getting them help, they couldn’t understand a disease with no cure.”
In school, the children were mocked in school and called names like ‘big-eyed boy’ and ‘Patlu’ meaning skinny which made them stop going to school eventually. Ali weighs 1st 8lbs, said; “None of us have had a childhood, we were confined to our homes. We had each other but that was it. We had no life. When we did go to school we were pushed and shoved, called names, kids tried to harm us. We can’t do much physically either; our lungs are so small we get breathless easily. I would love to be a normal person who can play, go to school, do some sports, take some risks. Sometimes I get depressed but most of the time I make the most of the life I have.”
Talking about his deceased brother who died last year, Ali said, “Iqramul was my best friend. I was very young when my other siblings died, so it were just Ikramul and I for a long time. He was very strong and didn’t pay any attention to the bullies. When he died I cried for weeks and couldn’t eat but then I realised I’d be doing him a huge injustice if I crumbled. I have no one now, no friends, but I have to stay strong.”
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