“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.”
When Ava’s wish came true, it motivated her to continue fighting her CF and further solidified her dream to one day become a LEGO designer.
During the first night of the LEGO Inside Tour, Ava and the other participants were given access to rows upon rows of LEGOs and asked to design a product. Ava immediately took her job very seriously, searching for just the right pieces. What she didn’t know was that this was actually a competition, and that she would soon take home the top prize for Best Overall Design. The judges, all LEGO designers, were “blown away” by Ava’s winning design, which was based on Fury, the fire dragon she had first imagined and built iterations of in her bedroom back home in Hawaii.
In addition to her trophy, Ava also took home a signed LEGO Elves set box. “As a going away gift, they found as many individuals who had worked on LEGO Elves and had them sign,” explains Megan. “The box is full of personalized messages for Ava—a priceless treasure she will value always!”
The entire experience was the perfect wish come true for a budding LEGO designer. “Being able to meet and talk with actual designers was incredible,” says Ava. “I feel more motivated to take care of my health and follow my dreams of being a LEGO designer.”
Megan sees this renewed determination and drive in Ava since the wish and notes that now when the family talks about Ava’s future as a LEGO designer, it’s not a matter of “if” but a matter of “when.”
“What an inspiration to keep her fighting – to know her dream can be a reality,” she says. “When we have goals, we find direction and purpose. Ava is not going to let CF slow her down.”