A grateful family supports research into genetic disorders
By Ryan Bermudez
Photography by Sonya Revell
Ryan and Rachel Belanger, with sons Chance and Trey
yan and Rachel Belanger have a bittersweet relationship with Pankaj Agrawal, M.D., chief of the Division of Neonatology in the Miller School’s Department of Pediatrics and Jackson Health System. In 2017, the renowned neonatologist identified the rare metabolic disorder that claimed the life of their newborn daughter, Bella. Years later, that same knowledge ensured that their two sons wouldn’t suffer the same fate.
“When we met Dr. Agrawal, we knew we were in the best hands,” Rachel said. “The way he made us feel and the way he treated us, we knew that he wouldn’t stop searching for answers.”
In gratitude, the Belangers established a nonprofit, Because of Bella, to support Dr. Agrawal’s groundbreaking research. The family continues to raise funds so physicians can better understand the role of genomic technologies in newborn care and screening.
“I want to build something here at the Miller School because Miami has many resources and so many patients who can benefit from this research,” said Dr. Agrawal, a professor of pediatrics and genetics, who joined the faculty in 2022.
The Belangers first met Dr. Agrawal in 2017 at Boston Children’s Hospital. Born seemingly healthy, Bella quickly, and without explanation, began to deteriorate. She endured countless tests and procedures but only lived three and a half weeks, passing on May 28 of that year. Shortly before she died, her parents joined Dr. Agrawal’s research study that used rapid whole exome sequencing to diagnose babies with complex cases.
Days later, they learned that the disorder Bella suffered from was HIBCH, a rare metabolic disease. Armed with that knowledge, the Belangers were able to use preimplantation genetic diagnosis IVF to prevent the disease from affecting their sons, Chance and Trey, who are now healthy 4- and 1-year-olds.
“We couldn’t save Bella, but she is saving others, and that is her legacy,” Ryan said.