Farmingville girl with leukemia needs marrow transplant
The Buttner family of Farmingville is counting its blessings this Thanksgiving: two beautiful identical twin daughters - Julianna and Jessica - now 6 years old, who were born a minute apart.
But their hope is for a miracle from the kindness of a stranger who could rescue Julianna from an aggressive form of leukemia, a disease that may prove fatal unless a bone marrow donor is found.
The Buttners, Michael and Lynda, have partnered with DKMS Americas in Manhattan, the world's largest bone marrow donor center, to sponsor a donor drive at the Farmingville Fire Department on Sunday from 1 to 5 p.m. The public is being asked to donate a sample of cells in an effort to find a possible match among residents of Long Island. Sampling requires only a quick swipe of cells that line the cheek.
"We've had a very rough stretch," said Michael Buttner, referring not only to Julianna's fight against acute lymphocytic leukemia - ALL - but Jessica's diagnosis of type 1 diabetes. The two diagnoses came six months apart in 2006.
But attention is riveted on Julianna now because the need for a donor has become critical.
Aggressive medical treatment had beaten her disease into retreat three years ago, but the leukemia - cancer of the blood - re-emerged in September. Doctors now say a bone marrow transplant is her only hope. The transplant would provide a new lease on life because with it comes a flood of stem cells capable of producing all of the constituents that make up a healthy blood supply.
"Leukemia kills more children than any other disease in the United States," said Katharina Harf, founder of DKMS, which she started after a futile search for a donor nearly 20 years ago for her mother, who died of leukemia in Germany.
A search of the DKMS database, however, revealed that no one worldwide could serve as a match for Julianna. The hope is that someone on Long Island, not yet in the database, may hold in their DNA the genetic blueprints to Julianna's survival.
Leukemia is a disease typified by the abnormal proliferation of white blood cells. Unlike normal cells, leukemic ones fail to proceed through a normal life cycle and die. Think of leukemic cells as cellular versions of Peter Pan - hellbent on remaining young and immature forever. Such a condition is incompatible with life.
The child was hospitalized at Stony Brook University Medical Center on Monday for chemotherapy that doctors hope will force her disease into remission.
Now, the clock is ticking because a transplant is optimally performed within three to four months after chemotherapy.
Dr. Davina Prakash, Julianna's physician at Stony Brook, said once the disease is in remission, the overarching goal is to find a donor.
Prakash said in other types of illnesses requiring a transplant having an identical twin is considered ideal - and Jessica still may serve as her sister's savior. But Prakash added there are other concerns: Jessica has type 1 diabetes, and she may be too close a match because just as the cancer-killing components in Julianna's blood (known as natural killer cells) can't fight off leukemia, her twin's wouldn't be any stronger because the two are genetically identical.
Buttner is hoping for a good turnout. "Now that we're approaching the holiday season I hope people start thinking about the gift of life, not just for our daughter but people like her in the same situation in need of a bone marrow transplant and do not have matches."