Leber congenital amaurosis 1 : ( Kristin Smedley) How I learned to see through they eyes of my sons.

A rare inherited retinal disease (retinal dystrophy) that starts during the fetal stage. Vision impairment is obvious at birth or within months of birth. Type I is distinguished from the other forms of this condition by the genetic origin of the defect – chromosome 17p13.1, RETGC1 gene.

When Kristin Smedley learned that her first child was born with a gene mutation that causes blindness, she believed the life she dreamt for her son was over. Smedley shares her very personal story of how she learned to see the world differently through the eyes of her children and that their dreams were even bigger than she could have imagined.

Kristin Smedley is an award winning nonprofit leader, rare eye disease advocate, speaker, and up and coming author – but she never planned on any of that. Kristin originally planned to be third grade “Teacher of the Year. But her personal path to greatness took an unexpected turn when two of her three children were diagnosed as blind. She quickly had to learn all of the tools of blindness and get them into the hands of her sons. She had to build a team of experts that would help her navigate this path. Kristin’s two blind sons, Michael and Mitchell, are thriving. The systems Kristin has put in place for her boys have worked to great success. Her boys’ achievements include baseball championships on “sighted” neighborhood teams, distinguished honors in “regular” public school, and finalists in International Braille competitions. Kristin and her family are role models and her motto, “Life is funny, sort of” is evident in her positive and uplifting attitude.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at http://ted.com/tedx