October is Blindness Awareness Month, and 13-year-old Khara is on a mission to raise understanding and acceptance for those living with visual impairments. Born with a rare condition called Septo-Optic Dysplasia, Khara has faced numerous challenges throughout her life. However, her determination and positive outlook have transformed these obstacles into opportunities for personal growth and resilience.
Understanding Septo-Optic Dysplasia
Khara’s blindness stems from the underdevelopment of her optic nerves, which began during the 14th week of pregnancy. This condition prevents visual signals from reaching her brain. When she was born, her mother noticed that Khara’s eyes moved uncontrollably and did not align properly, a condition known as Nystagmus. In addition to her blindness, Khara is missing a brain structure called the Septum Pellucidum, and she also has a growth challenge caused by an underperforming pituitary gland.
Daily growth hormone injections are a crucial part of Khara’s life, allowing her to grow and thrive despite the challenges. Diagnosed at just five months old, her condition affects only 1 in 10,000 newborns, making her journey even more unique.
Overcoming Challenges with Strength
Khara’s journey has not been easy. She faced delayed milestones, such as crawling and walking, and had to learn how to interpret the world without visual cues. For example, she didn’t crawl until she was one and a half years old and took her first steps when she was almost three. Khara relied on years of early intervention and support, which helped her access the world around her.
Reflecting on her experiences, Khara emphasizes, “Confidence is not about what you see, but about how you see yourself.” This statement encapsulates her positive approach to life and her determination to challenge stereotypes about blindness.
Advocating for Awareness and Inclusion
In a recent social media video, Khara speaks openly about her condition and her journey. “I was born with a condition called Septo-Optic Dysplasia… With this condition, my optic nerves are small and underdeveloped, which caused me to be completely blind with no light perception,” she shares. Her openness has resonated with many and serves to increase awareness about visual impairments.
One of Khara’s most cherished tools is her white cane, affectionately named “Cece.” This cane has become her constant companion, allowing her to navigate life independently. Khara often jokes, “I named her because she helps me see. See? Ha ha.” Through humor and strength, she showcases the power of resilience and the importance of embracing one’s identity.
