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Sykora's Story

Monday, May 2, 2011

Meet 2 year old Sykora.  Suspicions about Sykora's vision were confirmed when she was 4 months old.  She is blind.  She has had many diagnosis', including Leber's Congenital Amaurosis.  All of these diagnosis' seem to be part of a larger undiagnosed syndrome.  What is suspected now is that she has Joubert Syndrome, a very rare genetic disorder.

Sykora was born just the way she is.  When receiving the
diagnosis at 4 months everything yet nothing changed.  New symptom's appeared over the first year and a half.  After crying it out, her parents decided that knowledge is power.  They feel that every diagnosis has brought them closer to knowing her and being advocates on her behalf.  The hardest part of the journey for Shareen and Ryan has been letting go of the life that they had pictured for their daughter and just allowing "life to happen".  They enjoy moments, letting go thinking that life has to be a certain way.

For a child with no vision, Sykora has so much joy in her eyes.  "There is a light that shines from within that can't be explained", her parents explain.  She sees with touch, she is amazing.  She inspires her parents to live, to give her the life she deserves and to fight for her.  Sykora is a water baby.  She loves the pool, and in addition to charming those that know her from the pool, her whole town has embraced her.  Sykora is a true Tiny Light!
Photo courtesy Tonikka J Photography


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