This story was in the Philadelphia inquirer. Jeff is my nephew and Charlotte is his daughter. She has a potentially fatal bone marrow disease. Please keep them in your prayers and if you are familiar with bone marrow donors contact them and pass along information to the phone number below.


















Armenian churches join to help Bala Cynwyd girlCharlotte Conybear, 4, with parents Jeff and Ellen of Bala Cynwyd. She has a potentially fatal bone-marrow disease and so far no suitable donor has been found.



By David O'Reilly
Inquirer Staff Writer
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."

Contact staff writer David O'Reilly at 215-854-5723 or doreilly@phillynews.com.