Raya and Her Family Receive the Gift of a Lifetime

Raya and her mom, Mia, thoughtfully weighed her stuffed animal choices during a special event at Children's National Hospital before choosing the winner: a sloth dressed as a fairy. Like Raya, it was sweet and one-of-a-kind.

During a prenatal scan, Mia learned her future “cuddle bug” would have a genetic condition in which almost no wall separated her heart chambers. Mia was devastated and unsure what her daughter's life would look like if she lived at all. Her doctor referred them to the expert Cardiology team at Children's National.

Raya spent her first three months in the Neonatal Intensive Care Unit receiving oxygen, heart monitoring and nutrients through a feeding tube. “As a mother with a nursing background, I had high expectations for Raya's care,” Mia says. “Her nurses always addressed my concerns with compassion and made me feel confident in her treatment.”

At five months, Raya underwent a successful surgery to repair the hole in her heart. “Her surgeon, Aybala Tongut, MD, is forever an angel to us,” Mia says. “If not for her, we would not have Raya in our lives.”

With Trisomy 21, also known as Down syndrome, and her early challenges, Raya achieves her developmental milestones in her own time. She thrives as a toddler with annual check-ups on her heart and weekly physical, occupational and speech therapy sessions. Mia encourages everyone to match Raya’s care team’s patience — and earn one of Raya's coveted hugs.