According to a recent article, a mother was able to see her baby daughter clearly after being diagnosed with the rare Stargardt disease.
Stargardt Disease
Stargardt disease is an inherited disorder of the retina, the tissue in the back of the eye that senses light. The disease typically causes vision loss during childhood or adolescence, although in some cases vision loss may not be noticed until adulthood. It is rare for people with Stargardt to become completely blind; most people progressively lose vision to 20/200 or worse. (Normal vision is 20/20). Stargardt disease is also called Stargardt macular dystrophy, juvenile macular degeneration, or fundus flavimaculatus.
The most common symptom of Stargardt disease is vision loss in both eyes. Other related symptoms include:
- Gray, black, or hazy spots in the center of vision
- Delayed adjust when moving from light to dark environments
- Sensitivity to bright light
- Color blindness
- Loss of some of peripheral vision
Kayley Storey
After realizing she could no longer clearly see the board in school, Kayley Storey was diagnosed with Stargardt disease at fifteen years old. For her, the disease makes it impossible to focus on objects or people, which can be incredibly frustrating.
She describes her condition as “isolating.” She struggles with connecting with others, even if she’s in a room full of people. It’s hard for her to tell what’s happening around her.
Living With Her Disease
Despite struggling with her eye condition, Storey has continued to follow her passions, even auditioning on the popular television show X-Factor. As she says, her stage fright was lessened since she could not see the audience.
In 2018, she met her husband Ryan, but she hesitated when it came to growing their family. She worried she would pass her condition on to her children as it is genetic. However, her husband quelled her fears, and in 2020 they welcomed baby Ivy into the world.
Storey says she had prepared herself to never see her daughter’s face in clarity and accepted the challenges that would come with it.
Onyx Glasses
A tech start-up company, OXSIGHT, created special Oynx glasses that allow people with Stargardt disease to see the world in detail. The glasses are designed to digitally enhance the wearer’s remaining sight and cost $1,735.69 (or 1,499 Euros).
OXSIGHT generously lent Storey a pair of these glasses for her 33rd birthday, and the experience was exhilarating. She hopes to be able to purchase a pair of these glasses in the near future.
“I think about the future and how different it would be with these glasses,” says Storey. “I love being a mum it’s so amazing, and it really was the best birthday present to be able to see my little girl’s face for the first time.”
