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Any one have a kid with a 16p12.2 micro deletion,

Chrissy - posted on 07/20/2012 ( 1 mom has responded )

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My daughter has been diagnose with 16p12.2 micro-deletion syndrome. We have nothing to compare her to. all of our specialists has no idea what we are in store for, We know that she has sever developmental delay, motor, speech, cognitive, also been diagnosed with SPD and she has has gastric emptying delay, Swallow delay, aspiration. She has started Fevers working now on 3.5 months still no reason for them. information would be greatly appreciated.

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Tracey - posted on 07/28/2012

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my daughter who is now 11 months has 16p12.2 microdeletion syndrome . she has a small to moderate vsd a bicuspid heart valve ,her right arm is shorter and twisted at the elbow, her wrist turns inwards and her thumb is tiny in comparison to the left thumb. Her Geneticist has said its very rare and so can only give us a maybe on what to expect which is development delay , and learning difficulties .She does not crawl , does not speak yet and is just just on the 0.4th centile for weight and length .I search the web all the time looking . Unique has a excellent leaflet on 16p deletions and ive got more of a idea on what to expect from there .

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