WASHINGTON HEIGHTS — She’s looking for her perfect match.
Jeralene Ares and her family are traveling from their home in Rhode Island to Washington Heights Saturday in the hopes of making a life-saving connection.
Jeralene, 11, suffers from sickle cell anemia, a genetic disease that causes some of her red blood cells to be crescent shaped rather than round. The sickle cells can easily become stuck together and cause severe joint pain, an increased risk of infections and a shorter life expectancy for those with the disease.
This Saturday, her family and the New York Blood Center will hold a bone marrow registration and blood drive event to try to find a matching donor for Jeralene, whose best chance at a cure is a bone marrow transplant.
“If you look into sickle cell anemia, most of the people that have it don’t pass the age of 25 to 30,” said Jesus Ares, Jeralene's father. “I want to grow old and see my daughter.”
Jeralene was diagnosed with the disease around 8 months old, when she had her first sickle cell problem in her wrist, causing her hand to become extremely swollen.
Ares and his wife Arlene had never heard of sickle cell anemia, which is passed along when both the mother and father carry its recessive gene.
They have since become something of experts, accompanying their daughter on countless doctors visits and trips to the hospital.
Jeralene, now in the sixth grade, manages her illness with a daily does of liquid chemotherapy, which kills some of her sickle cells.
Her father said she has grown into a lively young girl, despite dealing with bouts of intense pain.
“She’s very active,” he said. “She’s right now in dance class. She just finished a little basketball tournament for her school. They won a championship.”
Coping with her illness has also caused her to mature at a young age, her father said.
“She’s a very, very strong kid,” he explained.
He noted that Jeralene often visits other children’s rooms when she is in the hospital to try to cheer the patients up.
When she was recently assigned a research project for science class, Jeralene chose to study sickle cell anemia.
The project raised as many questions as it gave answers.
“She was like, ‘Why this, why that, why me?’” Ares said.
While that last one is impossible to answer, Ares and his family are hoping to help Jeralene get some clear answers about her future.
“What we’re looking for is a cure,” her father said.
While more than 100 family and friends got tested at a bone marrow registration in Rhode Island last year, the family has yet to find the right donor.
That process is made more difficult by the fact that Jeralene is of Dominican and Puerto Rican heritage.
Bone marrow matches are more likely to be made between recipients and donors with similar ethnic backgrounds. However, Latinos and other ethnic minorities are under-represented in the donor pool, according to the New York Blood Center.
“By and large, I think Caucasians make up about 70 percent of recurring donors,” said Patrick Foley of the New York Blood Center. “The Latino pool is closer to 10 to 15 percent.”
Ares and his wife, who has extended family in Washington Heights, are hopeful that they might find a match among Uptown’s large Dominican community.
Both Ares and Foley encouraged people of all backgrounds to register, a two-minute process that involves scraping the inside of a person’s cheek with a cotton swab.
“This drive is first and foremost going to help Jeralene, but it will also help build the donor basis and educate this community,” Foley said.
Ares said that if they do not find a match in New York, they will keep searching, possibly by holding similar events in Puerto Rico and the Dominican Republic.
“I still have my fingers crossed,” he said. “I don’t want to give up that there might be a match out there.”
For those wanting to take part, the registration will run from noon to 6 p.m. Saturday at the FDNY EMS station at 501 W. 172nd St.