A 14-year-old boy 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.
Ali Hussain has seen five of his siblings die from the same condition called Progeria which 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.
Sufferer: Ali Hussain, 14, of Bihar, India, has Progeria which makes his body age eight times faster than normal. The rare condition is known to affect only 80 people in the world, but has killed five of his siblings
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.
Illness: Ali’s genetic condition effectively has the body of a 110-year-old because of the rare condition
Child victim: Ali Hussain is held by his mother Razia, 46. She has had eight children and six of them have suffered from Progeria
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.
Family victims: Nabi Hussain Khan, 50, (left) with his wife Razia, 46, (right) and their children. Sanjeeda, now aged 20, (back, centre) does not have ProgeriaRARE DISEASE WHICH HAS KILLED FIVE MEMBERS OF THE SAME FAMILY
Nabi Hussain Khan, 50, and his wife Razia, 46, have had eight children and six of them have suffered from Progeria.
- Their first child was Rehana, a girl born in 1983 who died from Progeria in 2007 aged 24
- Their second child Iqramul was born in 1987 and died in 2009, from Progeria aged 22
- Progeria sufferer Gudiya, born in 1989, died in 2004 aged 15
- Progeria sufferer Rubina, born in 1992 and died in 2004 aged 12
- Sanjeeda, who is now 20, was born without the killer disease and is now married with two healthy children of her own
- Progeria sufferer Ali was born in 1999 and is 14
- The couple had an unnamed son who died within 24 hours of being born. They claim that he was also killer by Progeria
- Their youngest daughter Chanda, aged 10, is also healthy.
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.
Illness: Ali is fed by his mother. Progeria causes rapid ageing and sufferers of the genetic disease are prone to arthritis, eye problems, heart disease and baldness
‘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.’
Victim: Ali, 14, who weighs just 1st 8lbs, is not expected to live more than a few years longer
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.’
Read more: Daily Mail
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