The bone-marrow registry that sponsored the donor-drive to find a tissue match for a 6-year-old Farmingville girl with leukemia received such an overwhelming response that it now will have to come up with more than $200,000 to have the samples tested.
DKMS Americas collected only $8,000 in monetary donations during the drive Sunday at the Farmingville Fire Station, nowhere near the amount needed to cover the cost of running the sophisticated panel of tissue-typing tests required to find a genetic match for Julianna Buttner, who needs a bone-marrow transplant.
DKMS plans to hold fundraisers to collect more donations to help pay testing costs.
Close to 2,700 people stood in line at the drive on Sunday to donate a sample of cells. An additional 800 people phoned the registry or applied online Monday, pledging to donate. A kit, which includes a swab to retrieve a sample of cheek cells, and tube in which to seal it, has been mailed to the 800 potential donors who registered Monday, said Katharina Harf, the registry's director.
She said DKMS will put the $8,000, plus money it has in its treasury, toward paying the $65 cost for each of the tests, which will be performed by Histogentics in Ossining. It will take three to four weeks for the results.
"This was our largest response ever in the United States. There has never been a bigger drive," said Harf, who was surprised by the number of people from Long Island who hope their genes hold the precise DNA blueprint capable of rescuing Julianna Buttner from leukemia.
The response was so overwhelming on Sunday, Harf said, that DKMS personnel had to make trips to local hospitals for extra swabs because there weren't enough at the drive.
Julianna has been diagnosed with acute lymphocytic leukemia - ALL - an aggressive disease that has not responded to chemotherapy. A bone-marrow transplant is her only option for survival.
Harf said anyone who missed the donor drive or who has been unable to register by phone or online can come to a second drive on Saturday in Ridge, which is being held for Penny Lindenberg, a mother of two young girls, who suffers from another form of leukemia and also needs a bone-marrow transplant. Donations will be accepted for both patients.
Registered nurse Kathleen Noone, manager of the bone marrow transplant unit at Stony Brook University Medical Center, said finding a match from an unrelated donor is like "finding a needle in a haystack."
"Only three in 10 people who need a transplant will actually proceed to it," she said, citing the uphill odds for patients in need of lifesaving bone marrow.