Family and friends are rallying in support of a local girl suffering from a rare blood disease.
Teachers from Jimtown Elementary School have organized a community 5K run and one mile family fun walk to help raise money for 7-year-old Bella O’Dell’s bone marrow transplant and expenses.
"She’s very strong and very tough,“ Bella’s mother, Amber Genovese, said. “She wants to do everything she’s ever been allowed to do.”
When she was three years old, Bella was diagnosed with aplastic anemia, a condition that leads to low levels of red and white blood cells and platelets. Her doctors believe Bella experiences an inherited blood disorder called Fanconi’s anemia, a type of aplastic anemia.
Fanconi’s anemia is rare, Genovese said, and Bella seems to have an unknown form of it.
“She actually has both genetic mutations for Fanconi’s anemia, but they are on two different chromosomes and to be diagnosed you have to have them on the same chromosome,” Genovese said. “They’ve never seen it before but they’re calling it Fanconi-ish. So there’s no name for it yet.”
According to the National Heart, Lung and Blood Institute (NHLBI), Fanconi’s causes bone marrow to stop or severely limit the production of blood cells. This means the body’s tissues don’t get enough oxygen because red blood cell levels are low, and the immune system is weak from too few white blood cells. People with Fanconi’s may have blood that doesn’t clot normally, a result of having too few platelets.
The first warning sign of Bella’s illness were the small bruises that would appear all over her body – especially on her legs.
“(The doctor) said it didn’t look like leukemia to him, and we were relieved,” Genovese said. “And he said ‘No, leukemia’s easier to treat.’”
Genovese said though Bella was healthy enough to attend Jimtown Elementary while making weekly visits to the hospital, her blood cell counts have been in decline since January. She will have to undergo a bone marrow transplant in June.
Clare Keith of South Bend Memorial Hospital said bone marrow transplants are generally expected to act as a cure, not just a treatment.
According to the NHLBI, even after a transplant the risk of some cancers is greater for Fanconi’s patients. But bone marrow transplants were a major advancement in the treatment of Fanconi’s.
Bella’s family set up a website dedicated to her and her story, called Bella’s Journey.
“One of our goals is to expand the national registry and potentially help Bella and others like her that are suffering through the same struggle of trying to find a suitable bone marrow donor for a loved one,” writes Bella’s grandmother Karen Harris in the website introduction.
Genovese said she plans to leave for Cincinnati Children’s Hospital with Bella on June 16, which happens to be two days after the race. In Cincinnati, Bella will undergo surgery and eight to 10 days of chemotherapy treatment before doctors implant her new bone marrow.
Bella will be an inpatient at Cincinnati Children’s for three months after the transplant. After that, she will have to live within 10 minutes of the hospital for at least three months until her body stabilizes.
“We have grandmas that are coming to help, and we have a lot of very good friends, fortunately,” Genovese said. “We have a pretty good support system in terms of people who are willing to step in and help.”
Because Bella’s hair will likely fall out from chemotherapy treatments, Genovese said, her family told her she could do whatever she wanted with her hair. Bella chose to dye her hair purple.
“We told her she could do anything she wants to it, she could cut it, she could dye it any color she wants,” Genovese said. “She wants purple hair, and we’re going to let her do it.”
The run/walk event to raise funds for Bella’s medical expenses will take place June 14 at the Jimtown High School Track.
Tangles Hair Salon in Goshen will be at the event to give visitors purple hair extensions in support of Bella. Genovese said there will also be a bake sale and bounce houses at the event.
Runners and families can enter the race by sending a $20 entry fee by June 6 or by paying $25 on race day. Entry forms can be found at the bottom of the Bella’s Journey website homepage. Those who want to make a donation can go to the website or donate at the race.