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
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