Diana’s Story

In many ways, Diana is a typical, wonderful 13-year-old girl. She sends texts constantly, loves to hang out with friends, and will break into a popular Disney or Broadway show tune at any moment.

But Diana struggles with something most teenagers will never know: severe vision impairment. When she was just three, doctors diagnosed her with two rare diseases. One caused a month-long kidney failure. The other, an autoimmune disease, resulted in 40 weeks of chemotherapy, steroids and immune suppressants. To her parents tremendous relief, she recovered. But they soon realized that the diseases had dramatically reduced her sight. “Diana was holding her children’s books really, really close to read them,” her mother recalls. An ophthalmologist diagnosed Diana with severe optic atrophy.

Not sure where to turn, her parents took her to Lighthouse Guild. At the age of 3, Diana received a functional visual assessment so she could be matched with Lighthouse Guild programs and services best suited for her. That included services that helped Diana socialize with other children and prepare for school.

Today, the Lighthouse Guild Parent Support Network gives Diana’s family access to a national forum where they can share their needs and concerns, as well as find resources to help Diana. “It’s a community of parents helping each other raise their visually impaired children,” Diana’s mom said.