ABQ Times

Sickle cell disease (SCD), a genetic blood disorder, affects thousands of children in the United States, leading to frequent pain crises and various complications that require lifelong medical care. At the UNM Health Sciences Center, families navigating pediatric SCD share their stories of strength, resilience, and hope as they partner with medical teams to manage this complex condition.

For Linna and Dan Dominguez, their journey with SCD began the day their daughter Olivia was born. "The same day she was born, they did the routine blood tests and told us she had full-on sickle cell," Linna recalls. The Dominguez family already had some knowledge of the condition, as Olivia’s brother carried the sickle cell trait, but learning that Olivia had the disease itself was a life-changing moment.

“When I was told that she had sickle cell disease, I kind of dug into research,” Linna says. “It really scared me. They were talking about lifespan... and some kids don’t even make it to adulthood.” Despite their fears, the Dominguez family found support through medical professionals who helped them manage Olivia’s care and her parents’ fears. “Olivia’s doctor, who we love, told us every kid is different, and we would have to proceed little by little,” Linna reflects. “There was definitely a lot of learning to do.”

Olivia is now five years old and is described as a vibrant child who loves her family and pets. Her parents strive to give her a joyful life while taking necessary precautions. “The best thing I heard from another father,” Dan says, “is you just got to let them live. We’ll see what the future holds, but we try to be cautious while letting her be herself.”

Their treatment journey has included hydroxyurea, which Linna believes has significantly reduced Olivia’s pain crises. "She was going through pain crises quite often, but now she doesn't have them as frequently."

Throughout it all, UNM’s pediatric sickle cell team has been a pillar of support. “They have been nothing but amazing with Olivia,” says Linna.

Maria Maruffi, MD, a pediatric hematologist-oncologist at the UNM Children’s Hospital explains that sickle cell disease is caused by a change in hemoglobin—the protein in red blood cells that carries oxygen throughout the body.

“Sickle cell is diagnosed through newborn screening,” Maruffi notes. “Usually within a couple of weeks of life we can detect it.”

The consequences of SCD can be severe due to damage caused by sickled blood cells affecting almost every organ in the body. “You can have damage to organs like the brain kidneys and eyes,” Maruffi says. “And the largest concern in day-to-day life is the pain crises which can last from hours to days.”

Despite these challenges Maruffi emphasizes that there is hope: "In the last five years there have been advancements in gene therapy which can replace the defective genes causing the disease." She also mentions bone marrow transplants another curative option showing success for some patients though these treatments are not without risks.

For Antoine Bondima and his son David now eight managing sickle cell disease involved uncertainty and hospital visits during early years: “Every year from year one to year six David got admitted to hospital about twice a year” Antoine says But things started improving when David began new medication two years ago: "Since then he’s been doing a lot better."

David echoes his father’s optimism: "For past two years I haven’t really had go hospital much If I do get crisis they usually last only few hours aren’t severe."

Despite availability gene therapy Antoine remains cautious opting it just yet: "It’s still kind its infancy We might wait until more established especially since David has been doing so much better recently."

Looking future Antoine David both hopeful: "I really feel anybody who has go through this" Antoine says "But you can get through It takes lot work education there’s been lot research it’s getting better."

Families medical professionals working pediatric sickle cell patients at UNM offer shared message resilience hope Linna Dominguez encourages families not afraid ask questions seek help: "Don’t afraid take your kid doctor if feel like need Don’t feel like wasting someone time" she says

"Sickle cell more common than people realize We healthcare providers need advocate treat these patients" — Maria Maruffi MD Pediatric Hematologist-Oncologist UNM Children Hospital

For Antoine Bondima educating his son about condition crucial: "I try my best let my son know what he has so he can help himself" His son David offers simple powerful reflection stating: "the medical people (at UNM) they’ve been really helpful made whole process more bearable And I’m really thankful for that"

As research continues treatment options improve families like Dominguez Bondima remain optimistic future

“Let them live their life” Dan Dominguez Kids will be kids—don’t limit them

UNM pediatric sickle cell program provides comprehensive care including treatment support groups family education empowering parents patients alike With ongoing research evolving treatment options families finding new ways manage sickle cell disease offering hope brighter tomorrows