Basically we learned it’s a very rare genetic cause to his central sight loss + autoimmunity causing peripheral loss. We will write more later, but please watch his video below. #Complex #Rare
I speak a lot about acceptance and how our family has adapted to our son’s sight loss from Retinitis Pigmentosa. However, I want to be real with you, I’m struggling right now.
We just returned from a visit to Duke Eye Center. Our youngest son, Kai, has previously been followed by Emory. We’ve visited Emory Eye Clinic 3 times over the last 7 years and they’ve run a number of tests and have run genetics tests twice. At the age of 10, Kai was diagnosed with Retinitis Pigmentosa. RP is a rod-cone dystrophy that causes a restriction in the visual field (think of looking through a tunnel) and eventually, in the late stages, causes the central vision to fail. RP is typically diagnosed later in life and is a typically slow progressing disease. Continue reading “The Struggle is Real”