Dylan is almost 2 years old, and lives in Georgetown, Texas. Dylan was diagnosed with Leber Congenital Amaurosis when she was 5 months old, and genetic testing determined it was caused by the RPGRIP1 mutation. She is incredibly smart, and loves dancing and jumping. She is in gymnastics, and enjoys swimming and looking at books. Dylan has three older siblings, that think she hung the moon. Our family feels so incredibly blessed to have Dylan in our lives, as she is forever inspiring us and teaching us new things! 




reagan & Kennedy

This is the Flege family. Reagan is 8 years old, and Kennedy is 6 years old. Both girls have LCA RPGRIP1. They enjoy camping, boating, Girl Scouts, gymnastics, piano, therapeutic horseback riding, rock climbing, and ropes courses. The sky is the limit with these two sisters. They love to try new things and be challenged. They impress and make us proud every day!  on the RPGRIP1 spotlight stories section here





Hunter is almost 2 years old, and lives in Gig Harbor, Washington. 

janie, luke, & Jack



Janie, Luke, and Jack are rambunctious and happy siblings diagnosed with LCA RPGRIP1. They live in Charlotte, North Carolina. Janie loves to read and draw, and she wants to be a scientist when she grows up. Luke likes to learn about cars and loves to run. Jack is an outgoing preschooler, who loves to chat, make jokes, and listen to music. He is the entertainer of the family! Our family is unique  with all three kids having LCA, but in so many ways it is wonderful!  


Caden is 13 years old. He is in 9th grade, and lives in Alberta, Canada. Caden loves to downhill ski, do water sports, hang out with friends, and is currently taking the Advanced Placement courses at his High School. Caden learned that his RPGRIP1 gene mutation was causing his blindness approximately three years ago.




Shrey is 12 years old, and in 7th grade. 




Reese is from Tremonton, Utah. She is 12 years old, and in the 7th grade. She has RPGRIP1. She loves to restore American Girl Dolls, babysit, go boating, and ride horses. She has a brother named Riggs, who is 8 years old. 


My name is Mikayla Larson. I am a 32 year old wife, mommy, massage therapist, and cancer survivor. I was misdiagnosed early in life with Retinitis Pigmentosa, and it wasn’t until I was 27 that I was genetically diagnosed with LCA RPGRIP1 mutation through the Sparks Therapeutics program. I unfortunately have begun to lose more sight these last few years due to LCA.


Krishita is 4 years old, and has been diagnosed with LCA RPGRIP1. 




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