“This is another dragon that I built—her name is Fury,” 12-year-old Ava says matter-of-factly as she gently lifts the red and orange dragon to better show off her creation. “She’s a character that I made up in my head, and I decided to build her.” Ava explains that Fury’s wings are made of fire (not just of laminated paper and LEGO pieces), and that the dragon can make them disappear and reappear when she needs them.
Ava’s creativity and love of LEGOs is limitless. Her room is lined with shelves of her creations and favorite LEGO sets—there’s even a lock on her door to keep them safe from little brother Elijah. Some are assembled to illustrate math problems or Bible stories. Some play starring roles in the stop-motion movies she writes and produces. Others are just for fun. Most provide an escape from her battle with cystic fibrosis (CF), a genetic disorder that affects her lungs.
Her LEGOs follow her everywhere, even to the hospital, which she visits every three months for routine appointments. Each appointment, Ava builds something new, concentrating on LEGO dragons and elves instead of blood draws and shots.
Wish mom Megan recalls first finding out Ava had CF during her pregnancy. Ava became the CF team’s first unborn patient, and Megan and her husband started planning, buying enzymes and therapy equipment right alongside bottles and diapers.
Ava has always handled her illness with maturity and strength. “She fights it, she takes it seriously, and she does what she needs to do,” says Megan. The whole family follows suit—even 4-year-old Elijah, who knew from the very beginning why the family washes their hands all the time and not to touch Ava’s medications.
Much of the family’s day is routine. Each morning, Ava completes her lung clearance therapy, which takes an hour and a half. She takes her 10-15 daily medications. After her schoolwork is complete, she does another 45-minute treatment in the evening. If she’s sick, the treatments double from two to four each day.
When her doctor and child life specialist referred her to Make-A-Wish Hawaii, it was an opportunity for Ava to shift some of her focus back on simply being a kid. “They thought the emotional and physical benefits—the benefits all around—would be really good for her,” explains Megan.
It didn’t take long for Ava to decide that visiting the LEGO headquarters in Denmark to learn all about how LEGOs are made and what it takes to become a LEGO designer would truly be a life-changing experience.
Says Megan, “I think it’s an opportunity to really celebrate Ava for something she’s passionate about—to really focus on Ava with something not CF-related, but what she’s interested in now and what hopefully the future will hold for her.”