Their Stories

Leber’s Congenital Amaurosis (LCA) is a global genetic disease. These children, adults and families hope that by sharing their stories they will raise awareness and educate others about the disease. Uniting people who share the diagnosis, and raising funds for the advancement of clinical trials can lead to a cure for this rare genetic disease that causes blindness. Roll over an image below, if there is a story to share a link will pop up. Do you have a story to share? Submitit story below and inspire others.

BEN OLSEN 

SEEMA

Seema is an energetic, engaging and passionate Visual Awareness and Disabilities expert.

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SEEMA
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Bella is 13 years old and lives in Syosset, NY.

BELLA
BELLA
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Cecilia 13 and Myles live in upstate, New York.

MYLES & CECELIA
 MYLES & CECELIA
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Zoe and Logan live in Colorado.

ZOE & LOGAN
ZOE & LOGAN
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Vicki is five years old, and brave, sweet and smart.

VICKI
VICKI
kendall-gibbs_edited.jpg

KENDALL

KENDALL

Kendall is 21 years old, and lives in North Carolina

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MATHIAS
LILY & BILL
MARIE 
FINLEY
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FINLEY

Finley is 112 years old and lives in Switzerland.

ABIAGIL
DARIUS 
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Rafael is 13 years old and lives in Brussels

RAFAEL
RAFAEL
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Tayler lives in Colorado Springs.

TAYLER

TAYLER

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At age 5 my family discovered I had a problem with my sight.

SUMAIRA
SUMAIRA

ANNA

ANNA

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ANNA

Anna is from Cypress, an island in the Mediterranean

danny-rdh12_edited.jpg
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Ben lives in illinois, and doesn’t let his vision loss stop him! 

BEN

BEN

DANNY
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Danny is 8 years old. He and his brother were diagnosed with RDH12.

KENDALL

Submit Your Story

Please let us know  if you have a story you would like to share with others. 

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