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.
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 Progeria
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 any 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.’
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