Six-year-old Alfredo Diaz’s nickname is “Alfry the Warrior.” He has a rare inflammatory bowel disease, IL 10 receptor deficiency, that’s resistant to treatment. A blood stem cell transplant from a genetically matched donor is his only hope for a cure.
He was a big baby, born weighing 9 pounds, 15 ounces. But within a week, Alfredo had a 103-degree fever and wasn’t eating. He had to be fed through a tube and spent his first four months of his life in the hospital’s NICU. The family wasn’t sure what was wrong and doctors frequently ran tests. He didn’t get a formal diagnosis until he was three years old.
Alfredo can’t control his bowels. He must wear diapers and often gets rashes. He recently got a temporary ostomy bag, where his waste is collected in a pouch.
He frequently has fevers, infections, and gets dehydrated. At the time of this interview, Alfredo had just gotten out of the hospital where he’d been treated for 17 days.
The second-grader from Chicago gets weekly iron infusions and struggles with heart problems and stage 3 kidney disease — both brought on by the steroid medicines he takes.
Doctors have told the family that without treatment, he could die.
“I don’t want to lose him,” says Natalia Torres, his mother. “Alfredo is my everything.”
Finding a match
The only treatment option is a blood stem cell transplant. The family was cautiously optimistic a few years ago when Alfredo got an umbilical cord blood transplant — but it didn’t work.
This spring, Torres reached out to Be The Match®, operated by the National Marrow Donor Program® (NMDP), a nonprofit organization that matches patients with volunteer blood stem cell donors.
She’s confident they’ll find a match for her son.
“There’s one out there,” she says. “We just have to find him or her.”
Because genetic type is inherited, Alfredo is most likely to match someone who shares his Mexican heritage.
Currently, Hispanic patients only have a 46 percent chance of finding a match. More Hispanic and Latino donors are needed.
Torres encourages everyone, especially Latinos, to join the Be The Match Registry here – it’s free and confidential. They’ll mail you a kit to swab your cheek; send it back so they can learn your genetic type and they will add you to the donor registry. If you’re ever a match, patients and their families are counting on you to say “yes.” You could be someone’s cure.
“It comes from your heart because you want to help someone in need,” says Torres.
Big spirit
Alfredo weighs just 39 pounds and is the height of a three- or four-year-old. Still his spirit is larger than life.
“His smile will brighten your day,” says Torres. “He’s a personality. Everybody loves him at school and at the hospital — everybody knows him.”
Alfredo, who’s fluent in both English and Spanish, likes to play video games and wants to be a wrestler or a basketball player when he grows up. His current goal? “When he was at the hospital, Alfredo told his nurse, ‘I need my match. I need to find my match,’” says Torres.
Alfredo has Facebook and Instagram pages and his family does community awareness and donor registration events. So far, he’s registered 1,600 people into the Be The Match program.
Torres looks forward to the day her son is cured, thanks to the generosity of a blood stem cell donor.
“We’ll see Alfredo running without stopping, playing, and swimming,” she says. “He’ll run around just like any other kid.”