Pingree Grove girl urgently needs a matching donor, because she has plans for life
Lavinia Santos is a bubbly 6-year-old who loves dancing, Walt Disney World and coloring her hair pink. She also has a rare, life-threatening autoimmune disease that affects less than one in a million people.
The Pingree Grove girl has been waiting for a stem cell transplant since age 2, and her parents - who are only partial matches - fervently hope more people, especially Latinos, will come forward to be tested as potential donors. Patients are most likely to find a full match from someone from the same ethnic background, experts say.
“It's a struggle, every day, even to sleep and to wake up. It's really hard to see,” said Lavinia's father, Gilmar Santos. “We live with this doubt that we don't know what to expect for tomorrow.”
Lavinia has complete interferon-gamma receptor deficiency, meaning she can't properly fight infections stemming from nontuberculous mycobacteria, which are, well, pretty much everywhere.
“They're in water, they're in soil. We're kind of exposed to them all the time,” said her doctor, Bessey Geevarghese, a pediatric infectious disease physician at Ann & Robert H. Lurie Children's Hospital of Chicago.
“Sometimes healthy kids get lymph node infections (from mycobacteria) and we treat them with drainage and antibiotics, and they are OK,” Geevarghese said. “People that have this defect, it goes into their bloodstream and they don't have the mechanism to fight it off.”
Be the Match is the largest and most diverse bone marrow and blood stem cell registry in the world, but only 7 percent of its 19 million registered donors are Hispanic or Latino, said Erica Sevilla, multicultural public relations strategist for the organization.
That means Lavinia has a 46 percent chance of finding a match, compared to a 77 percent probability for white patients, Sevilla said.
“We just rolled out a five-year strategic plan, and this is absolutely a priority for us, to increase diversity,” she said. “We believe it's very important that every patient has an equal opportunity to get the treatment that they need, and the treatment that their doctor is recommending.”
About 14,000 patients a year, on average, need transplants and don't have a match in their family, Sevilla said.
Lavinia, whose nickname is “Lala,” has been in and out of hospitals since she was an infant, is constantly monitored by doctors, and takes six daily medications, one intravenously.
Her disease is so rare that the family last year traveled to Washington to meet with experts from the National Institutes of Health.
And yet, with the resiliency common of little kids, she is always happy and full of energy, Ana Paula Santos said.
“She makes thousands of plans for her life,” she said.
Her parents worry constantly, because a simple cold can knock her out for a week. Each time she gets an infection, it weakens her immune system, which in turn makes a transplant more risky, they said. “Every time she sneezes or coughs, you worry,” her mother said.
Gilmar Santos said they have faith that God will take care of Lavinia.
“As parents what we are looking for is an answer (doctors) can't give us,” he said. “What we would like to hear is that she's going to be fine and everything is going to be OK.”
Could you be a match?
To find out if you are a potential donor for 6-year-old Lavina Santos of Pingree Grove, visit
join.bethematch.org/loveforlavinia and complete an online form.Be The Match will send a cheek swab kit with a return, postage-paid envelope.Doctors typically look for people ages 18 to 44. About one in 430 members of Be The Match in the United States will go on to donate to a patient.Blood stem cell donation requires a daily injection for five days, then blood donation at a local donation center.