ARMENIAN CHURCHES JOIN TO HELP BALA CYNWYD GIRL
By David O’Reilly
Philadelphia Inquirer
9667202.html
April 1 2010
For more than 1,000 years, Armenians have celebrated Easter with
cries of "Chrisdos haryav," "He is risen."
But on Sunday, Armenians at five local churches will be invited to
participate in an Easter ritual most have never experienced. They
will be asked to swab their mouths in a DNA search for a bone-marrow
donor who could save an ailing 4-year-old girl from Bala Cynwyd.
"We chose the day because many people will be here," said the Rev.
Hakob Gevorgyan, pastor of Holy Trinity Armenian Apostolic Church in
Cheltenham. He predicted that from 300 to 400 people would turn out
for Easter liturgy at his church alone.
Eight Armenian churches in California, two in Boston, and one in
Washington are also participating in the search for a donor.
In August 2008, Charlotte Conybear’s parents first noticed bruises
on her legs.
"We were not too concerned at first," Ellen Conybear said Wednesday
as her daughter, pale with dark eyes, drew with crayons at the
kitchen table.
"She was 21/2 and playing in a new playground," father Jeff said. "We
thought she was just being more active."
Tests at Children’s Hospital of Philadelphia at first suggested ITP,
a relatively benign blood disorder. But later tests revealed aplastic
anemia, a potentially fatal failure of the bone marrow to generate
sufficient blood platelets and red and white blood cells.
"They told us her bone marrow was empty," Jeff Conybear said.
"We took her out of day care right away," said her mother, a lawyer
on maternity leave with 3-week-old daughter Caroline. "If she ever
hit her head, it could be very serious."
Drug therapy in May failed to improve Charlotte’s rapidly declining
platelet count, but doctors assured her parents that there would be
no difficulty finding a bone-marrow donor.
But they were startled to discover there were no DNA matches among
the thousands of potential donors in the national registry.
The doctors asked about the Conybears’ ethnic backgrounds, which
includes English, Polish, and Italian. "When I mentioned I was
also part Armenian, they went, ‘Ah,’ " said Ellen Conybear, whose
family name was Jerrehian. Armenians have DNA features distinct from
Europeans, and different genetic diseases.
So the doctors turned to the national registry of bone-marrow donors
of Armenian descent and found just partial matches, which they said
they would use only in a crisis.
Tests on Charlotte’s 2-year-old brother, Jack, showed he was not a
match. Caroline is too young to even consider, and parents are not
suitable donors.
The prospects of finding a match seemed bleak until November,
when Ellen’s brother Dean Jerrehian checked in to a trade show at a
Rhode Island hotel and discovered that it was hosting a bone-marrow
registration drive.
Weeks later, Jerrehian, who makes and sells yoga mats, was on a sales
trip to San Francisco and asked a yoga studio to host a similar drive
among local Armenians.
But when Aline Aghababian, 39, of San Francisco, saw the fliers in her
neighborhood promoting the one-day effort, "it made my heart sink,"
she said.
"We don’t have many Armenians in our neighborhood," she said. "I was
in a panic for them. I’m a mother, and all I could think of was what
they were going through."
Aghababian called Jerrehian the night before the registration. "I
said, ‘This is not going to work here. Have you tried contacting any
[Armenian] community groups?’ "
Jerrehian said he and his family were not active in the Armenian
community or its churches. So Aghababian, who is active in hers,
began phoning Armenian churches around San Francisco, asking whether
they would agree to a registration drive on Easter.
"They all said yes, immediately," she said.
Stunned by the response, the Conybears, who are Lutheran, began
calling the Philadelphia area’s Armenian churches.
"Some said yes right away," Ellen Conybear said. "A few said they
thought Easter would be too busy, but when they learned the others
were doing it, they said, ‘Yes, we have to do this.’ "
Gevorgyan, the pastor of Holy Trinty, said his church would invite
members to take the test during the coffee hour after liturgy.
The test consists of swabs taken of the inner cheek with cotton-tipped
sticks. The sticks, bearing the owners’ DNA, go to a national
laboratory for testing and registration.
Donors must be between 18 and 60 and available to donate bone marrow
and blood promptly if notified they are the right match. Charlotte’s
treatment might require the donor to give only blood, from which stem
cells are extracted.
The Conybears expect the Easter effort to yield thousands of tests and
at least a few matches. But their prayers won’t stop if they find one.
"We’re not really sure" of Charlotte’s prognosis if she gets a
transplant, her father said. "We’re told it’s decent."
The Conybears expect to learn in a few weeks whether they have a
match. Meanwhile, on Sunday, they plan to attend Easter services at
St. Paul’s Lutheran Church in Ardmore, then visit some of the Orthodox
churches where the donor drive is taking place.
"We want to put Charlotte’s face out there," Ellen Conybear said,
"so people know who it is they’re helping."