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About Prader-Willi Syndrome
From Wikipedia: Prader–Willi syndrome (ˈprɑːdər ˈvɪli; abbreviated PWS) is a rare genetic disorder in which seven genes (or some subset thereof) on chromosome 15 (q 11–13) are deleted or unexpressed...
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Amazing Grace – a special thank you
As crappy as Little Miss Adorable’s start in life was, we remain grateful to (most of) the doctors and (most of) the nurses who helped us along the way. I cannot say enough about the nurses in the...
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Amazing Grace – a special thank you
As crappy as Little Miss Adorable’s start in life was, we remain grateful to (most of) the doctors and (most of) the nurses who helped us along the way. I cannot say enough about the nurses in the...
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Prader-Willi Welcome
My daughter, Little Miss Adorable has Prader-Willi Syndrome. If you are a parent of a child with Prader-Willi Syndrome, let’s connect through the comments on this blog or twitter @specialneedmom2....
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PWS + DMD = big problems… dinner at our house
dinner at our house… Little Miss Adorable has Prader-Willi Syndrome (PWS). That means she is little, cute, has low muscle tone and is developing an insatiable appetite. This is part of PWS – as she...
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Little Miss Adorable, Speech, Language and Swear Words
Little Miss Adorable has the very low muscle tone of most babies with Prader-Willi Syndrome (PWS). She is little, floppy, and does not say much. All Little Miss Adorable’s muscles are affected by...
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What does Prader-Willi Syndrome mean?
What is Prader-Willi Syndrome anyway? From Wikipedia: Prader–Willi syndrome (ˈprɑːdər ˈvɪli; abbreviated PWS) is a rare genetic disorder in which seven genes (or some subset thereof) on chromosome 15...
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The Princess Gene
I am convinced there is a DNA sequence for attraction to glitter, tulle, and feather boas. I am convinced there is a unique DNA sequence for those who can pull off wearing all three, at once, with...
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Special Needs Parenting: What I wish I would have known
Recently a new reader stumbled across my blog in search of answers to Prader-Willi questions. You can imagine the kind of questions parents new to a diagnosis would ask. I really can’t answer any of...
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