In many ways, 8-year-old Audrey is like a lot of other girls her age. She loves animals, going swimming at the beach, watching Sesame Street, and her favorite Disney princess is Moana.
“Audrey is a curious, resilient, and strong-willed little girl,” says her mother, Carrie.
This resiliency has helped Audrey with the challenges she has faced due to her rare genetic disorder, AADC deficiency, which affects her nervous system functioning and her cognitive development. Even getting to the diagnosis itself was a challenge, as there are only 150 cases of AADC deficiency known worldwide.
“It took us sixteen months to find a diagnosis,” says Carrie. “That was a hard and frustrating journey.”
Audrey spent significant time in the hospital as doctors searched for answers. She would only watch two movies during this time–Frozen and Moana.
“Moana got her through her toughest and sickest days,” says Carrie. “She would watch it over and over when she was receiving treatments.”
Carrie says Audrey is drawn to the story because “Moana is curious about the world beyond the reef and is so brave and never gives up.”
While there is currently no cure for Audrey’s condition, doctors can work to relieve some of her symptoms. “Knowing there is no cure for this devastating disease, and more than sixty percent of the diseases out there, is very shocking,” says Carrie.
Nevertheless, she says that the family is still able to stay positive. “This is our reality,” she explains. “We accept our life and all the challenges that come with it.”
Last year, Audrey was able to participate in a medical trial procedure with UCSF, where she underwent gene therapy. “Although it is not a cure,” says Carrie, “we see improvements.”
Audrey was very excited when wish granters revealed that her wish to go to Disney World and meet Moana was coming true. Although she is nonverbal, Audrey expresses herself through a communication device, and in the weeks leading up to their trip to Disney World, Audrey would user her talker to communicate words like “beach,” “swimming,” and “Moana.”
When the magical week arrived, Audrey and her family experienced a lot of “firsts.” It was Audrey’s first time eating a banana split for breakfast, the family’s first time riding an accessible train all by themselves, and lots of first-time hugs for Audrey from Mickey, Goofy, and Mary Poppins. Other highlights of the trip included taking in the Christmas parade, staying up late every night to watch the fireworks, and Christmas shopping on Main Street.
“Audrey was so excited going out there to see the world,” says Carrie. “It is so big. So much to see and do.”
And then there was the big moment, when Audrey met Moana. They had a private meeting and Audrey was enraptured.
“Audrey was fascinated by her dark hair, the details on her dress, and Grandma Tala’s necklace that Moana was wearing,” recalls Carrie. “They had a long conversation.”
The trip was a chance for the family to take a break and spend time together without needing to worry organizing anything. “Planning a meaningful trip like this for a family with medical needs takes a village,” says Carrie. “Make-A-Wish truly goes out of their way to make a kid’s wish come true. We are so grateful for such a great organization and all forces behind it.”
Carrie says that the family will cherish this trip and remember it for the rest of their lives. And, of course, Audrey will always remember meeting Moana!
“Moana fights evil and brings hope and new life to the world,” Carrie says. “We love a story with a happy ending.”
Do you know a child like Audrey who could use the transformational power of a magical wish come true? Fill out our referral inquiry form today. Remember, every wish experience begins with a referral.