Rare genetic disorder: Meet the 14-year-old boy with the body of a 110-year-old

A 14-year-old boy Ali Hussain has been left with the body of a 110-year-old in India because he has a rare disease which makes him age eight times faster than normal.  The rare condition called Progeria  is known to affect just 80 people worldwide.

Two of his brothers and three of his sisters have died from the disease in Bihar, the poorest state in India.

Progeria causes rapid ageing and sufferers of the genetic disease are prone to arthritis, eye problems, heart disease and baldness. Sufferers are not expected to live much beyond the age of 14 - but despite the grim prognosis Ali has refused to give up hope.

‘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.’

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.

A fifth child, a boy who died within 24 hours of being born, is also thought to have had the rare condition.

Nabia and Razia, who have had eight children in total, do 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.

 

When their first daughter, Rehana, was born in 1983 they had no idea anything was wrong at first. It was only after her second birthday when she couldn’t eat or walk properly did they visit a doctor. But the doctor was baffled and he sent them home with some medicines. Progeria was so rare and poorly documented that most doctors had never heard of it. 

Two years later when their son Iqramul was born,and showed the same symptoms, the family went back to the doctor. But again, they were not offered any tests or possible diagnosis.

 

Nabi, who works as a gatekeeper at a factory earning 2,000 rupees - or £20 - a month said: ‘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.’ Nabi and Razia carried on having children hoping they would conceive a healthy boy or girl eventually. Their wish was granted when they had Sanjeeda.

 

In 1995, after years visiting different doctors, a consultant in Kolkata finally diagnosed four of their children with Progeria and broke the devastating news that there was no cure for ay of them. ‘The diagnosis didn’t help,’ Nabi added. ‘People were sure there was a cure. No one in our community believed there was nothing that could be done.

'Neighbours and extended family tormented us for not getting them help, they couldn’t understand a disease with no cure.’ Life was made unbearable for the five children growing up with Progeria and they were mocked in school and called names like ‘big-eyed boy’ and ‘Patlu’ meaning skinny. Eventually they all stopped going to school.

Ali, who weighs just 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.’ Ali is now the family’s only surviving Progeria sufferer. When his brother Ikramul died four years ago he was devastated.

‘Iqramul was my best friend,’ he said. ‘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.’

Ali and his parents are now supported by a Kolkata-based charity called SB Devi Charity. Pediatrician Dr Chandan Chattopadhyay, from Kolkata, introduced the family to the organisation and now they help Ali pay for his medical needs. 

Ali spends all of his time with his mother and sisters, Sanjeeda, 20 and Chanda, ten, and he believes there’s no one else like him in the world. But when told about the famous annual Progeria Reunion, run by the Sunshine Foundation, he would love to attend.

‘It’s very lonely living this life, especially since my siblings have gone,' he added. '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.’  

source Dailymail