Brilynn is legally blind.
Most people watching seventeen-year-old Brilynn Rakes dance would be shocked to find out the obstacles she has gone through to become so talented. At two months old, Brilynn’s mother Deb noticed her daughter’s eyes were shaking. When she would reach for a toy, she would always reach for it a foot away from the actual spot it was in. After getting an MRI, Brilynn was diagnosed with nystagmus and cone dystrophy. The doctors informed her mother Deb that her daughter was born with a neurological birth defect. The wiring from her brain to her eyes is what causes the nystagmus (affecting 1 in every several thousand people), and also causes her eyes to shake. Her world is constantly shaking – when she uses her peripheral vision it’s not as bad.
Cone dystrophy affects approximately 1 in 30,000 people in the US. It means her eyes don’t filter out light the way a normal eye would, causing everything to be 20 times brighter. Brilynn is legally blind and can’t see past 10 feet in front of her. Cone Dystrophy is most likely the cause of her vision loss. In bright light, her vision be blurry and washed out, which is why its harder for her to see during the daytime. Brilynn has to wear tinted contact lenses. The lenses correct her eyes to 20/200 vision. When Brilynn is outside, she has strong sunglasses that she can’t be without. As time went on, she was also diagnosed with color blindness, which is extremely rare for a female. Brilynn has memorized her wardrobe to know which color is which.
Having so many eye issues has affected her everyday life. She has large print books for school and the book is usually 4 inches from her nose. If possible Brilynn tries to listen to her schoolbooks as books on tape to help the strain on her eye. To watch television, Brilynn sits 2-3 feet in front of the TV. She carries a monocular with her at all times in case she needs to use it to magnify something to see better.
Brilynn will never be able to drive so getting around can be difficult. For her first 16 years, she has been practically glued to her mom. But as she’s getting older, Brilynn decided she wanted more independence so she’s been working with a mobility teacher for a year now. The teacher takes her outside, walks her around and makes her more familiar with traffic, how to look up a bus schedule, how to find the bus, what the route is, how to listen for the beeps on the cross walk, etc. Brilynn’s goal is by June is to learn how to take the bus to the mall and back by herself. She dreams of living in NYC because it’s easier to get around without a car. She’s looking into potentially getting a seeing eye dog or using a cane to help.
The hardest part about Brilynn’s condition is her balance. At age 8 she began dance lessons. She’s studied ballet, contemporary and modern. When Brilynn started dancing, she could not balance for the life of her. In fact, it took her an entire year to learn how to do a single turn. She was so frustrated with her inability that she would throw fits, cry and practice nonstop at home. Brilynn knows that she is always going to have to work harder than other dancers. But she has learned certain tricks that aid her – she has better balance when she turns her eyes to the side, using her peripheral vision. While studying at Julliard this past summer, Brilynn learned to imagine strings holding her up from the ceiling to keep her positions. Relying on other senses such as hearing also helps tremendously. Once Brilynn accepted her visual impairment and learned to use it to her advantage her technique and artistry greatly improved. She can’t wait to one day make dance a career.
wow I just can’t, wow
Brooke is a genius, and so is Liz and her beautiful dancers ughh