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Hiya ladies, would it be possible to have a private post? My son is currently …

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Hiya ladies, would it be possible to have a private post?
My son is currently undergoing tests for Sturge-Weber Syndrome, though its seeming to be a definite diagnosis.. without sounding like im prying, has anyone had this diagnosis in themselves or their children? How does it effect your/their day to day lives? I’m really quite worried and confused, its all happened so quickly, anyone that’s willing to share its very much appreciated
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