Boy,14 with the body of a 110 year-old Ali Hussain, suffers from rare genetic disorder
‘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.’
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.
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:Mailonline
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