Retinitis Pigmentosa is a blanket term for a group of eye disorders that cause gradual, progressive vision loss. It usually starts in adolescence and affected individuals are legally blind by age 40. Generally, people with RP lose their night vision first, followed by peripheral vision, color sensitivity, and contrast sensitivity. Although most people with RP are eventually classified as legally blind, many do not lose all their vision.

As usual, Grace is different. When she was first diagnosed with RP at age 2, she was already legally blind. She had only approximately 10 percent of her vision remaining, all centrally. At last year’s eye exam, the opthamologist approximated that Grace had 5-10 percent of her vision left. Today, we had Grace’s yearly eye appointment, and the doctor confirmed that Grace has no peripheral vision. This wasn’t really surprising; we have noticed Gracie’s vision worsening.

The doctor jokingly referred to Gracie as “Professor” as she talked to her two students about Gracie. She quipped, “Early graduation for anyone who can figure out Gracie’s case,” as the students examined Grace’s severely damaged retinas. It was funny at the time, but there is a painful truth that whatever is going on with Gracie has never been seen before.

I just recently was virtually introduced to another mother of a toddler with RP. It was both sad and exciting to hear about another young child with RP—sad because of course we wouldn’t wish this on any family, but exciting because finally there is someone with the same disease as her. But, this other girl does not have the severity of symptoms that Grace has (thankfully!). She is not legally blind, and although it’s unusual for someone so young to be diagnosed with RP her case is not as rare as our Gracie’s. And, more importantly, this other girl feels pain. So, although we now have a new friend and new fodder for playdates, we are no closer to finding anyone else like Grace.

I don’t have a whole lot of hope that we’ll ever find an answer for what’s causing Gracie’s disease(s). And, realistically, it wouldn’t change anything, anyway—there is no way we would give Grace pain at this point because she would ache all over all the time, and perhaps technology will give her vision again when she’s older, but for now there is nothing for us to do but watch her world go dark. As depressing as it sounds, though, Gracie is a beautiful light in her own right and we have only to look at her to know she’ll be fine.