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.
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.
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.
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.
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. 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."
Progeria causes rapid ageing and sufferers of the genetic disease are prone to arthritis, eye problems, heart disease and baldness
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. 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.
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. 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."
No comments:
Post a Comment