When Silver Spring resident Becky Cole learned that her mother had a rare blood disease, she was at once deeply dismayed and at the same time infused with an insatiable desire to find a cure.
Cole immediately identified the options available to help her mother, local artist Ellen Cole, who was first diagnosed with the symptoms after fainting at a play featuring her other daughter, Laura Cole, last February. Blood specialists and doctors informed the Coles that Ellen was suffering from a disease so rare that it doesn't even have a name. She would need a bone marrow transplant to survive. Untreated it could become leukemia.
After searching the Internet for major organizations that take bone marrow donations, Cole found the United States branch of the Germany-based DKMS, the world's largest donor group with 2 million registered donors in Europe and another 88,000 in the U.S.
Within weeks, the Coles had held their first area DKMS fundraiser at McGinty's Public House in Silver Spring on June 16. Legions of friends and family have since flocked to the cause, contributing to a follow-up silent auction fundraiser Saturday at Seeker's Church in the Takoma neighborhood of Washington, D.C. Forty-six new bone marrow donors registered at the event, which raised also about $4,500 for DKMS, according to Becky Cole.
Elan Comegys-Brisbane, who has been friends with Becky since she was 5-years-old, said she did not hesitate to volunteer for the event and donate to the cause once she learned of Ellen's disease.
"The first question I asked was how do I find out if I can sign up to be a donor?" she said while helping to run the silent auction Saturday. "I'll be registering today."
Given her fairly common blood and tissue type, Ellen Cole has about an 80 percent chance of finding a donor match, according to her doctors, a rare bit of luck considering that only about three out of 10 patients on the national registry receive life-saving transplants, according to DKMS spokeswoman Maria LaGamba.
"That's why there's such a need for more people to register [to become donors]," she said in a telephone interview Monday. "African-Americans and Hispanics [for example] are underrepresented on the national registry."
About 8 percent of donors on the registry are black, while Hispanic donors make up 10 percent compared to the roughly 75 percent of donors who are white, LaGamba said.
Because Cole is white, she is more likely to find a positive match than a minority patient. Matches are made for a patient's tissue type, an inherited trait that is much more commonly matched within the same ethnic or racial group, according to DKMS spokeswoman Kelly Taylor.
For her part, Ellen Cole is grateful for the help and support of her family and friends. She is hopeful that she will soon be cured of the disease that has already claimed the lives of her father, Julius Aronofsky, who died from complications of a bone marrow disease called myelofibrosis in 1993, and her sister, Barbara Aronofsky Latham, of leukemia in 1984.
"My hope is to be well again not only to survive but to be well again because there are so many things that I have to look forward to," she said, fighting back tears as she expressed her love for the family that has rallied to her cause. "I want to be with my family."
Bone marrow donation organization DKMS will be hosting a number of area fundraisers in the coming months that will benefit local patients Ellen Cole and Silver Spring resident Jonathan Haupt, who has leukemia. For more information or to register to become a donor, visit the organization's Web site, www.dkmsamericas.org.
