The medical questions: What is optic nerve hypoplasia? And does it cause the kind of vision problems that Taylor experienced? Could an operation really restore her sight? And can you get an operation faster by paying cash?
ophthalmology at the Johns Hopkins University School of Medicine. It's a congenital condition (present at birth). It's marked by an underdeveloped optic nerve, which is the nerve carrying signals between the retina — the eye's camera — and the brain. Some people with optic nerve hypoplasia have more vision loss than others. But Zack says it doesn't get steadily worse, which makes Taylor's case unrealistic. Another medical misstep: There is no operation for the condition at any price. There is, however, an experimental stem cell treatment, which evidently wasn't theatric enough for the movie — and isn't peer-reviewed or generally accepted at this point.
But perhaps Taylor was misdiagnosed. The illness presented in the movie looks a lot more like a family of inherited conditions known as retinitis pigmentosa, says Dr. Steven Schwartz, professor of ophthalmology and chief of the retina division at UCLA. This type of vision problem is caused by abnormalities of light-gathering rods and cones in the retina. There are many different types of retinitis pigmentosa, Schwartz says, causing symptoms such as night blindness (if the rods are primarily affected) or loss of central and color vision (if the cones are primarily affected).
Taylor's case most resembles a type of retinitis pigmentosa known as leber congenital amaurosis, Zack says. But no matter what the exact diagnosis, it wouldn't be possible for a doctor to predict that she would be totally blind in a year, he adds. As with optic nerve hypoplasia, there is no standard operation for the condition, though there are experimental procedures to implant artificial retinas. Clinical trials of gene therapy also have shown promise, but "the long-term efficacy and safety of the treatment is still unknown," he says.
As for the dramatic heart of the movie — well, reality would have been less moving. Eddie's generosity would have saved the foundation some money, but it would not have put Taylor on the operating table any sooner. Schwartz says that in the U.S., ethical guidelines determine who's next in line for an operation, and "paying cash never puts a patient in the OR sooner than other patients."
Siegel is an associate professor of medicine and medical director of Doctor Radio at New York University Langone Medical Center.