Ten-year-old Ava has a lot of favorite things: her doll, Rapunzel; dancing; gymnastics and swimming (she’s a Special Olympics gold medalist); Meghan Trainor’s song Me Too; her cat, Splash; anything related to the movie Moana; doughnuts; playdates with friends; her toy kitchen, where she makes giant “meals” with her brother; and shopping — as long as there’s a toy involved.
“She has very good negotiation skills,” says her mom, Kavita, with a smile. “To get the iPad, she’ll say: ‘Dinner, schoolwork, iPad – deal?’”
Ava is incredibly funny, say her parents, and very strong-willed. “One of her early speech therapists would always say, ‘Ava likes chaos, as long as she’s in charge of creating it,’” says Kavita. “That’s still true.”
Ava also has plenty of empathy. She always offers her arm to help older relatives walk to the car, and comforts others when they’re sad. “If a classmate is upset, she’s the first one to try to help,” says her dad, Doug.
Raising awareness about trisomy 21 is very important to Ava’s family. Every year, they give presentations at Ava’s school as part of World Down Syndrome Day – much to the delight of her classmates and teachers. “The entire staff gets involved, and the kids really look forward to it,” says Kavita. A few years ago, her school’s Down Syndrome Day celebration was even featured on the front page of the local paper!
This year, Ava is a Patient Champion for the CHOP Buddy Walk, the single largest fundraiser to support research and care for children with trisomy 21 at Children’s Hospital of Philadelphia. Ava’s family has been part of the Buddy Walk since she was born, and they’re looking forward to joining their friends at Villanova University Stadium in October to show their support for the Trisomy 21 Program.
“We love the team at CHOP – we’re so blessed to have their guidance,” says Kavita. “And we love that the CHOP Buddy Walk promotes inclusion and awareness of people with Down syndrome.”