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Sitlali's Story

Monday, October 15, 2012

Memories Captured By Natasha Dixon

Meet Tiny Light Sitlali. This Tiny Light loves playing in water, reading books and people-watching. She is especially happy if there is a snowman in sight and is always up for a cuddle!
Sitlali was born with a rare muscle disorder called centronuclear myopathy. This disorder initially makes an individual very weak but allows them to gradually build strength over time. At one month old, Sitlali had difficulty feeding and moving her head, which led her parents to seek the advice of a neurologist. After a diagnosis was determined, a G-tube was inserted to assist her with feeding. The disorder prevents her from meeting the majority of her physical milestones and makes her more susceptible to complications when suffering from a common illness. Although she will always be physically weaker than others, she will eventually grow to be able to eat and walk on her own.
Sitlali’s parents say the hardest part of their journey has been the uncertainty of the future as every child with the disorder is affected differently. They are inspired by the way Sitlali has adapted to her disorder and strive to stay positive.  Their hope for their Tiny Light is that she grows to be confident in who she is and finds love.
As a message to others in similar situations, Sitlali’s parents say, “Take one day at a time and don’t be afraid to ask lots of questions. It’s a scary thing to deal with but your child will amaze you every step of the way.”
Story by Stephanie Bond


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