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Raising a child with Kleefstra Syndrome.
Vanessa Khoury knew that something was wrong with her newborn daughter Gabby, despite doctors telling her she seemed fine.
Vanessa and her husband, Simon, refused to accept that answer and continued to push for a diagnosis. Finally, when Gabby was 11-months old, genetic testing diagnosed her with Kleefstra Syndrome (KS). There are only approximately 500 families with a child with KS in the world, and to their knowledge at the time, very few other cases in Australia.
They began scouring the internet and reaching out to other Kleefstra parents around the world looking for answers, and a way to…
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