Vietnam teen battles rare ageing disease
HO CHI MINH CITY - Nguyen Thi
Ngoc is dying of old age, yet she is only 13.
In the slums of Vietnam's Ho Chi Minh City, formerly Saigon, Ngoc
teaches herself mathematics and chronicles her life and hopes as she
waits for a cure to her illness.
Ngoc is Vietnam's first known case of Hutchinson-Gilford Progeria
Syndrome, a rare disease that ages the body so rapidly its victims
die before they have barely experienced youth.
Worldwide only some 100 cases have ever been reported,
according to medical journals and doctors. The cause remains as
elusive as the cure.
But Ngoc has an added disadvantage. She was born in one of the
world's poorest countries, which has neither the means nor the
expertise to properly treat her.
International help sought
Doctors at Ho Chi Minh City's An Binh Hospital have pleaded for
international help.
``Because there's so little known about this disease, we need help
from those countries with more developed technology and research
to help treat it,'' said Le Dinh Loc, head of pediatrics at the hospital.
Little more than a metre (3.28 feet) tall and weighing 10 kilograms
(22 pounds), Ngoc has the stature of a young child. But in
appearance she carries the hallmarks of a woman in her seventies or
eighties.
She walks with the weary gait of an old woman. Her skin is wrinkled
and flabby, her fingers gnarled.
But Ngoc makes no willing concessions to old age.
During weekly medical examinations she slips in and out of her red
platform sandals but refuses to part with the pink chequered cap that
hides her balding scalp.
Mentally, her doctors have argued, Ngoc is probably more capable
than girls her age. But schooling has become another casualty of the
disease, not just because of her health but because she has become
a novelty.
Sometimes others laugh
``I want to go to school, but sometimes (students) just laugh at me,''
she said.
Ngoc was born in impoverished central Vietnam, the first child of a
farmer who sided with Viet Cong guerrillas fighting against the
American-backed army of South Vietnam in a devastating conflict
that ended in 1975.
Now a noodle-seller on the teeming streets of Ho Chi Minh City,
Ngoc's father makes little more than 20,000 dong ($1.50) a day,
most of which goes to rent a tiny room in the seedy slums.
``Her condition is getting worse,'' said Ngoc's mother. ``But we'll
keep doing everything we can for her...so that she can live a normal
life like other people.''
Ngoc has already begun living on borrowed time.
The average age when victims of the disease die is 13, but Ngoc is
still making plans.
``I want to be a doctor,'' she said resolutely when asked about the
future. ``To open a private clinic so that I can care for poor and
disabled people.''
Each day she fights on, planning her life with the same precision
other girls her age use to put on their makeup. She writes reams of
letters to the nurses at the hospital, and when lonely, she writes to
herself.
The diminutive Ngoc refuses to give up hope.
Reuters - March 10, 1999.
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