LEDYARD, Conn. (WTNH)-- All the world's a stage for a 10-year-old Ledyard girl who is living with a rare genetic eye disorder. She began dancing at three but walks with a cane due to her weakened eyesight.
When you ask Sofia Priebe about living with Leber's Congenital Amourosis, she basically shrugs it off, saying she's just like any other 10-year-old girl who loves school and loves to dance.
It's lunch time at Ledyard Center School. Mr. Rode's 5th grade class is where Sofia Priebe is surrounded by friends.
What is not clear to visitors is that Sofia has Leber's Congenital Amourosis.
"It's hard to see things that are far away or when it's really bright out." When asked if she can see color, Priebe said, "yes but sometimes I get them confused."
It's hereditary and one of the leading causes of blindness in children. Sofia's optometrist, Dr. George Adrian explains.
"By affecting the DNA, it interferes with the production of the protein and the cells and the physiology of the retina and then again young children will start losing their vision, sometimes very rapidly," said Adrian.
Her parents saw a significant change when Sofia was about 18 months old.
"We noticed if the color changed on a carpet, maybe she would feel ahead to make sure there wasn't a change in depth. If there wasn't a color change, she used to walk off a flight of stairs," said Laura Manfre, Sophia's mother.
Now the 10-year-old walks on stage, performing to her heart's content but it's challenging.
"It's hard because they shine a lot of bright lights on my face," said Priebe.
Practicing with her teacher makes things easier.
"It's easier when my teacher wears black because the real room is all light colors and most of the time he uses verbals, he explains what to do," said Priebe.
In the classroom, the lights are dimmed for Sofia's sensitive vision.
Kaela Lorenzen is a BFF.
"No different than any other friends. She's no different than I am," said Lorenzen.
Aidan Davies has known Sofia since pre-school.
When asked why he admires here, Davies said, "because she does stuff not like us, because she has to do it the hard way."
Gene Replacement Therapy is a promising treatment that could restore Sofia's eyesight.
A benefit to help fund that research is set for this coming Saturday, October 12th at Olde Mystic Village. The event begins at 7 PM.
For tickets, call the box office at 860-536-3671 or go to www.sofiasees.org.
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