Like most eight-year-old girls, Lillian likes to ride bikes, design bracelets, go swimming and hang out with her friends. But Lillian is not the same as most girls her age. “She is an extra rare girl,” her mother says. And rare she is. At two, Lily was diagnosed with a metabolic disease that almost took her life.
That was the beginning of her medical journey. Since then, she has been hospitalized more than a dozen times, and has been diagnosed with epilepsy, muscular myopathy, and a gene mutation that causes malignant hyperthermia. Lillian and her family are no strangers to hospitals and ERs. Even just a few weeks before her wish trip she was undergoing a muscle biopsy. Since the trip, back in November of 2017, she has since been diagnosed with a mitochondrial disease that has an unknown genetic cause and an extremely rare genetic syndrome with only 155 confirmed cases worldwide called ADNP.
Fortunately, Lillian is as strong as they come. A “trooper” her mother says. “She rarely complains, and if anyone asks her about her braces [that she uses for medical reasons] she tells them she is unique.” Even when Lillian eventually had to quit dance when she got older and it increasing became more difficult to keep up with the routines, she stayed positive. When asked what the most difficult aspect of dealing with Lillian’s illness has been, her mother answered that it is “not being able to take this all away from her.” Even though Lillian stays strong throughout her condition, some days are harder than others, and her mother says the family is always planning ahead, “because Lillian getting sick is always in the back of our minds.”
A little over a year ago the family found out about Make-A-Wish through the president of the ADNP Foundation, and the family knew a wish was something that Lillian would not only love, but something that would give her the strength she needed to keep fighting. When it came time for Lillian to choose her wish, the choice was any easy one. She quickly thought of the “funnest” place she could think of…and no doubt that was Disney World, “The Happiest Place on Earth!”
During their trip, Lillian dressed up as a princess, met Cinderella, get toys from Santa, and even saw a cute sloth, all the while forgetting about doctor visits or medical procedures. For a few days, she could just be a kid. One thing in particular that stood out to Lillian’s mother was the cast of characters at Universal Studios. “They treated her like royalty and spoke directly to her,” her mother said. The cast members even acted as personal tour guides of sorts, bringing the family to a special area and calling over characters just for Lillian. As the family member who spends the most time with Lillian, her mother told us that “it meant the world to see her eyes light up.”
Lillian’s twin brother, Bennett, also has ADNP syndrom. According to their mom, it’s hard for Bennett to “spend nights alone without Lily. It was important for him to spend this week with his sister and not worry about her.” She continued, “This trip is something our entire family will not soon forget.”