September 17 the warm sun that washed a ward of
the Los Angeles's City of Hope hospital was fused
with the breath and hope of living.
In the morning, when a vital marrow was brought
into the ward, the young boy, Armen, started singing
"Happy Birthday". By then he had two
birthdays - one on November 17 and this one, the
day he would be re-born from the clutches of his
Half a world away, members of the Armenian Bone
Marrow Donors Registry celebrated with him.
Armen had intense leukemia. The tortures of chemotherapy
were useless, and the family was advised to apply
to the Armenian Bone Marrow Donors Registry. Two
months later his life was saved through a marrow
transplant and today he lives in Glendale where
he is daily getting stronger.
During the two-year history of the Armenian Bone
Marrow Donor Charitable Trust this was the first
transplant, however more than 100 patients, among
whom there were 30 children, were hoping, waiting
for a life-granting donor.
Four-year old Ani Tovmasyan was a very active
child who enjoyed singing, dancing and drawing
before being diagnosed with aplastic anemia. Now
her primary activity is playing doctor, treating
her suffering doll patients, telling them, "You
have aplastic anemia, so you need to take prednisone".
Like many, Ani waits in hope of finding someone,
somewhere, whose genetic makeup matches hers.
The Armenian Bone Marrow Donors Registry is the
only one of its kind not only in Armenia, but
also in the whole region, where serious research
in the area of bone marrow is being done. The
potential of the laboratory can later be used
to contribute to transplant of other organs (liver,
kidney, etc.) in Armenia.
Armenians have a unique genetic type, and so
for Armenian patients it is practically impossible
to find appropriate donors in the world's registries.
As a result of genetic incompatibility Armenian
patients needing a marrow transplant usually die.
It became, then, important to create an Armenian
donors registry for Armenians spread all over
the world, which will give a wide range of opportunities
to save lives of Armenians suffering with leukemia
and other diseases of blood.
"Having our Armenian registry gives an opportunity
to concentrate our efforts for recruiting donors
in Armenian communities and create an Armenian
data bank," says executive director of the
Armenian Bone Marrow Donors Registry Sevak Avagyan.
Marrow transplant is a last hope for those who
suffer serious blood diseases, such as leukemia
and aplastic anemia. Unfortunately many children
are carriers of those diseases.
Depending on the type and stage of a disease
the chance of saving patients through transplant
is 40-50% among adults and 60-70% among children.
The most important thing for finding an appropriate
donor is to have a rich data bank. The staff of
the registry and numerous volunteers recruit donors
in areas where there area many Armenians. Till
now 5,000 donors have been recruited in Yerevan,
Artsakh, Los Angeles, San Diego, Boston, New York
Donor recruitment activities are planned to evolve
in Detroit, Fresno, Pasadena, Montreal, Toronto,
Lebanon and Argentina.
The first step in donor recruitment is donating
blood. After deciding a tissue type, the blood
is placed in the data bank and if there is a compatibility
with a patient, then a little marrow is taken
from the hip of a donor with a slight anesthetization.
The donor feels only a slight pain in the hip,
but the result could be life-saving.
All the researches done by the registry are free
of charge for both donors and patients.
In 2000 the Armenian Bone Marrow Donor Charitable
Trust was granted the prize of President of the
Republic of Armenia in the area of healthcare.
In 2002 during the Women in Business award ceremony
president of the registry, Doctor Frieda Jordan
was awarded the first prize for the important
contribution to the area of science.
However, letters and grateful looks of the patients,
who patiently wait for their savior, are the most
valuable estimate for the registry.
"If the registry saves only one life, it's
going to be 100 percent worth it," says Hripsime
Boyajyan. Her son went through several courses
of chemotherapy and radiotherapy and they all
"Our last hope of survival was a bone marrow
transplant, but he died before one was found.
We could not help Sarkis in time, but I know -
as the registry grows - we can help others,"