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Sydney's Story

Friday, October 5, 2012


Memories captured by Melissa DePape Photography
www.melissadepape.com

Three year old Sydney is a very sociable little girl who loves being around other people and frequently offers up her big drooly kisses! Aside from hanging on to her favorite monkey, she adores listening to stories read by her older sister Aurora. This Tiny Light has proven to be an inspiration to her entire family.

By all appearances, Sydney was a healthy baby, although within months she was missing milestones. Then at six months she started having infantile spasms. Finally, at ten months Sydney was diagnosed with a rare chromosome disorder called isodicentric 15, which means she has a duplicate 15th chromosome. She also has hypotonia, epilepsy and learning delays.

News of Sydney's diagnosis came as a shock to parents Jonathan and Amanda, who admit to being in denial at first. Amanda says, "We try to live in the moment and take each day as it comes." That has been challenging, as the frequency of Sydney's seizures have been overwhelming, as many as 50 to 80 per day. Fortunately a number of families impacted by the same disorder have provided a great support network. "In recent months we've been thrilled to see Sydney crawling and pulling herself up to standing! And while our little bundle of inspiration isn't able to talk just yet, we remain optimistic that one day soon we'll get to hear those first words."


written by Catherine Urquhart

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