Dear Henry

Finding Felipe a donor

May 25, 2007

By JUSTINA WANG Staff Writer

When Nancy Valverde kept watch over her newborn son for three months in the hospital, nurses told her they had expected she’d give him up for adoption.

A 21-year-old undocumented immigrant who already had two toddlers, she now had a baby whose tiny deformed bones twisted his hands inward and revealed a fatal genetic disease. But Valverde shook the thought of adoption vehemently away. She would keep the infant, because of her integrity as a mother and the integrity of her community. “Hispanics take care of each other,” the Aurora woman said firmly.

Now, as doctors say her 16-month-old son, Felipe Aguilera, needs a bone marrow transplant to live, Valverde’s still counting on the kinship of Latinos, who are the most likely matches for her son.

But she’s fighting long odds.

Less than 1 percent of eligible Latinos give blood in the Chicagoland area, according to LifeSource, a local agency that collects blood and registers bone marrow donors. By comparison, about 3 percent of eligible Caucasians donate. The national average of all races nationwide is 5 percent.

Neither Valverde, nor Felipe’s father Salvador Aguilera, nor his 2- and 4-year-old siblings, are bone marrow matches for Felipe. So earlier this month, LifeSource offered a free bone marrow screening in Aurora to help broaden the pool of possibilities.

About 240 people showed up — a relatively large turnout, but a number Valverde worries isn’t big enough to combat the “one in a million chance” of finding a donor. As the family awaits the screening results, LifeSource is running seven more bone marrow drives this Saturday.“

(Felipe’s) fighting a lot, so why wouldn’t we?” Valverde said. “Why would I give up if he’s not giving up? I’m not allowed to.”

But she fears undocumented Latino immigrants won’t show up for the screening because they think it will give away their status.

LifeSource spokesman Tammy Basile said information collected during blood and bone marrow drives is confidential, and citizenship status is never asked. The drives are also staffed with bilingual workers who can help Spanish speakers.

At her mother’s Aurora home Wednesday evening, Valverde nudged a bottle into Felipe’s mouth as he awoke from a quick nap. At 16 months, he weighs 17 pounds, has a tiny splint on his left wrist and tries to bury his head in his mother’s arms.

Valverde talks about his disease in the calm tone of a doctor:Felipe was diagnosed at birth with Fanconi anemia, which makes him easily susceptible to other diseases, leukemia and other cancers. He has had two transfusions when his blood count dropped. His blood count is now in the low 50s. If it falls below 33, he might die.

The child has had seven operations: one to repair a hole in a heart valve, one to implant a feeding tube into his stomach, one to place a tube in his ear, one to fix his left hand and three to place a shunt in his brain to drain excess fluid.

Even if he receives a transplant, he must undergo chemotherapy and radiation, and his body could still reject the bone marrow.

But Valverde doesn’t waver.“You cannot even imagine the amount of faith I have,” she said. “I don’t know how long we have, but I have so much faith right now. I have to.”

© Copyright 2007 Sun-Times News Group