Frankie and Olyviah are siblings living in Eugene, Oregon. Both Frankie and Olyviah were diagnosed with NF as babies; their mom, Ayanna, also has NF1.
Frankie’s family was told he’d never walk, talk, or even make it to his teen years. He just turned 22 and, despite all of the pain and discomfort, has a happy disposition and is an absolute joy to be around. As a baby, it was discovered that Frankie had a tumor on his optic nerve that grew to erode part of his skull, which led to the removal of his eye. In 2016, Frankie had surgery to remove all the remaining eye systems, including tear ducts, his eyelids and eye lashes. He can now comfortably fit glasses on his face and no longer suffers from ongoing infections. Frankie also experiences developmental delays as a result of all of the complications from NF.
Unlike her older brother, Olyviah is less noticeably affected by NF. She has multiple café au lait spots and has had several surgeries to remove painful tumors. She also has ADHD and receives accommodations at school due to learning disabilities resulting from NF; nonetheless, she is determined not to let NF prevent her from achieving her goal of traveling the world. Olyviah speaks Japanese and dreams of visiting Japan.
What is your favorite food?
Olyviah: Pasta
Frankie: Pasta
What is your hobby?
Olyviah: Listening to music and SnapChat streaks
Frankie: Listening to music
If you could have any superpower, what would it be?
Olyviah: Teleportation
What is your motto in life?
Olyviah: If you can’t baffle them with brilliance, blow them away with BS
Frankie: Never give up!
As the 2018 NF Ambassadors, Frankie and Olyviah will attend the NY Gala on November 9, 2017 in New York City. They will also continue their involvement with the Foundation throughout the year at the annual Seattle NF Walk, NF Camp and other events that take place around the country.
