When was Olivia diagnosed with FA?
Olivia, now a 3rd grader at St. Elizabeth Ann Seton, was diagnosed with FA Feb 2020 at 6 years old. FA seems to be more critical the younger the patient. Her mother, Mary, said that she suspected something was going on when Olivia was 18 months old but, FA being a rare disease, it took a few years to eventually be referred to the Mayo Clinic and receive the diagnosis. Because of her young age, Olivia cannot qualify for clinical trials but there is hope that at some point in the not too distant future, she'll be accepted into one. Mary stays informed via clinicaltrials.gov and through FARA's app.
What is a typical day like for Olivia?
Mary and Matt encourage Olivia to pursue her interests and not let FA limit her. They try not to be too hypersensitive while still being vigilant for Olivia’s welfare. At school, Olivia has permission to now take the elevator but she continues to take the stairs with the help of friends and faculty who have known her since she was 18 months old. Because her hand tires more, the school now allows Olivia to get help with handwriting her homework.
The wheelchair is now Olivia’s main mode of transportation when visiting the zoo due to the grounds being so large. Yet nothing will keep Olivia from her dance classes. Her love of ballet is more than just a passing fancy. The Nutcracker has been her favorite ballet since first seeing it at the age of four years old. Her mother, Mary, says she was mesmerized. She now attends the ballet as often as possible. Since starting classes at two years old, Olivia’s love of ballet has not waned. For the last three years, she attends weekly classes at Studio J, a faith-based dance studio. When the time comes Studio J’s owner said she is willing to bring in another teacher to assist Olivia.
In addition to ballet, Olivia attends free therapeutic riding classes at Coffee Creek Riding Center, a stable which has been providing hippotherapy to special needs children for the past 43 years. The mission of Coffee Creek is to help children with disabilities gain strength, coordination, balance, and self-image – utilizing the horse as a motivator in therapeutic riding classes. Because a horse’s walk mimics how a human walks, these sessions help strengthen the core which, along with ballet, could help Olivia slow down the progression of her disease.
Since receiving the FA diagnosis, who has inspired you to adapt and help olivia live life to its fullest?
The Gehrs have definitely inspired us. After receiving the diagnosis, local medical providers connected us with the Gehrs another local FA family who founded the Cure FA Soirée. Eric and Liz give their opinion but don’t force it on you. They have guided us and have embraced us. Their advice: “Don't just try to chase down a cure and spend time always going to doctors. Enjoy life with your daughter.” They are good people! We’ve been working on applying their advice and realize that, although their is no cure yet, the cure will come with enough resources. That’s what the Soirée is about…providing enough resources to FARA to fund the search for that cure.
Olivia, What are your hopes and dreams?
To get rid of FA.
Become a nurse like my mom.
And, one day dance in The Nutcracker.