Cheryl Jones didn’t know how to respond after taking her daughter, Leah, to yet another eye doctor to see why her daughter had so much difficulty seeing clearly, when the doctor told them “she’s probably pretending to have such bad eyesight so she can wear cool glasses like her friends.”
Her daughter— who was in fourth grade at the time— couldn’t believe it either. She’d been struggling since kindergarten to see the board and her friends in her classroom. She had already been to eight specialists by the time of this visit and none could explain why she couldn’t see the TV if she sat on the couch with her parents. She always had to sit right up in front of the screen to be able to see anything.
It was a year later, at age ten, that Leah’s diagnosis was finally made. Upon walking into the room, the doctor saw Leah try to read the eye chart while tilting her head to the side. “He knew straight away what my daughter had—Stargardt’s disease”—a juvenile form of macular degeneration— “It was such a relief to finally know what was going on,” Ms. Jones recalled, thoughtfully.
Stargardt’s disease is a rare genetic eye disease that affects the macula, the central part of the retina that normally provides our sharp 20/20 vision. The disorder impacts about one in 10,000 people. Early on it may be very difficult for eye doctors to diagnose Stargardt’s Disease because the macula can appear normal for many years, prompting some doctors to think that the child might be fibbing. But eventually the macula does begin to change and the diagnosis can be made.
Understanding Stargardt’s Disease
Once her Stargardt’s diagnosis was made, Leah was introduced into the world of low vision aids—special equipment and software that enlarges print to make it easier to see and access. But not that it was easy! Leah could be found in school rolling her heavy backpack, full of large print materials and bulky equipment like her electronic screen magnifier called a CCTV that has a special camera used to enlarge print. In each classroom, Leah would have to wheel her bag in and set up her equipment, and when she got to high school, it meant doing it sometimes eight times a day. And to get around school with her heavy rolling backpack, she’d have to use the school’s elevator requiring special permissions, forms and signatures— a parent’s nightmare.
“Her school librarian was moved to help us by adding a large print section in the library for Leah. Though it took a long time for Leah to finish reading each book, we felt that her gesture was so kind and sympathetic— it’s just one of many examples of how we’ve learned to navigate the challenges that Leah faces day to day,” her mother explained.
But about one month ago, Leah’s navigation through her visual impairment took a spectacular turn.
Leah was referred to Dr. Sonya Braudway, an optometric physician who specializes in low vision rehabilitation in Lakeland, Florida. Working at the Center for Retina and Macular Disease, Dr. Braudway demonstrated a pair of special eyeglasses designed for the visually impaired. These low vision aids, called Ocutech Bioptics, contain miniature telescopes that work like binoculars. In mere moments, Leah felt the ground shift under her feet.
Leah, whose vision is normally 20/400, can now see 20/60 with her special Ocutech bioptics— a reality made possible by her grandparents who purchased them for Leah when they saw how happy they made her.
“It’s like getting to watch her grow up again overnight,” her mother said. “She’s become so much more curious about the world, because now she can see it, just like any normal kid.” And since her bioptic is focusable, she can use them to see better at any distance she needs including the TV, her computer, her Nintendo, as well as her art projects.
Low Vision Rehabilitation
Dr. Braudway has prescribed Ocutech bioptics for children many times before. “It’s one of the most rewarding things I can do,” she said. “The impact that bioptics can have for children can be so profound. It helps them come out of their shell, and the smiles we see when they first begin to use it—oh my! It’s a shame that more families don’t know about this technology. It can be so pivotal in their children’s lives.”
These days, Leah, now 15, attends Excel Christian Academy in Lakeland, Florida. She’s happily adjusting to her new life as an Ocutech user. Whether it’s joining her classmates in the hallway instead of riding alone in the elevator, sitting between her parents on the couch to watch television together, finally getting to read signs, go shopping, see her friends and family— and even enjoying trips to the zoo where for the first time she can really see the sloths and giraffes in their pens— Leah is excited about what it all means for her future.
“Now we’ll find her looking at our old wedding photos hanging on the wall, staring at the wedding dress, the flowers and our family’s faces— seeing them all with quite literally a fresh pair of eyes,” Leah’s mother shared. “It’s amazing what a difference these glasses have made for her in such a short period of time; I’m not worrying so much anymore— she’s so much more independent and happy… [the way] every girl her age deserves to be.”
Ocutech bioptics are prescribed by Low Vision Specialists throughout the world. To learn more about Ocutech bioptics, and whether you, your child, or a loved one might be a candidate contact Ocutech at firstname.lastname@example.org.