Kaylin is 13 years old and has Bardet-Biedl syndrome (BBS). BBS is a complex disorder that affects many parts of the body including the retina. Individuals with this syndrome have a retinal degeneration called Retinitis Pigmentosa (RP). RP is a group of genetic disorders that affect the retina’s ability to respond to light. This inherited disease causes a slow loss of vision, beginning with decreased night vision and loss of peripheral (side) vision. Eventually, blindness results. Unfortunately, there is no cure for RP.
Kayins BBS diagnosis was confirmed at age 9 when visual problems due to RP were discovered. In addition to RP, Kaylin was born with polydactyly (extra fingers and toes). She was diagnosed as having conductive bi-lateral hearing loss.
Kaylin is now legally blind. She carries a cane to help her with ambulation as her vision decreases. She has no depth perception, therefore, her risk of falling down, tripping or bumping into objects is greater. And, despite a learning disability (developmental, cognitive), she has an appetite for knowledge.
Kaylin’s absences from school have increased as she has to be monitored by different specialist and physicians. Due to the BBS, Kaylin runs the risk of developing renal (kidney) disease, heart problems, and/or truncal obesity due to diabetes.
Kaylin graduates from middle school in June, and it is my hope that she becomes as independent as she can be. She truly is a remarkable young lady who has a lot to offer. Kaylin does not let her disabilities hinder her abilities. I can always count on Kaylin to do her very best, even though her very best may not be up to some people’s standard. Many people do not comprehend her disease, as it is very complex.
But, I hope to remedy the lack of knowledge about her disease, by raising awareness and education. Thank you for this grand opportunity.
For more information visit Kaylin Rae’s Page at Facebook.