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Kailyn's Story

Saturday, September 15, 2012
Memories Captured by Jennifer Newberry Photography

 Meet Tiny Light Kailyn. This loving little girl enjoys playing with cause and effect toys and anything that lights up and makes music. She also loves anything to do with water. She is sweet, feisty, and won’t take “no” for an answer. Kailyn loves exploring her surroundings and making her parents smile. Her mother also reports she “gives the best hugs and kisses of anyone I’ve ever known.”

When she was six months old, Kailyn was diagnosed with a form of epilepsy called Infantile Spasms. This seizure disorder is devastating to a child’s development and puts the child at high-risk for long-term disabilities. Though the condition is rare, it usually has an underlying cause, which Kailyn’s parents did not discover until a year later. In January 2011, Kailyn was diagnosed with a rare chromosome disorder called isodecentric 15q, which is a partial duplication of chromosome 15. This has left Kailyn with global delays; she is dependent on adults for all aspects of daily living.

Kailyn’s parents Renee and Gerard are unsure about what the future holds for their daughter. Kailyn’s seizures are controlled by steroids and she has been seizure free since February 2010. There is a chance of her seizures returning, but her parents are hopeful that won't happen. As her mother says, “Our baby girl will always be our forever child. She will always be dependent on us. That's okay with me; I know she was given to us to show us amazing things that we never imagined before and to make our lives better. She has succeeded in that, and continues to amaze us every day.”

Story by Emily Harrison


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