I received a call on Monday afternoon from our geneticist; she was calling to let me know that Leyla's test for Prader-Willi Syndrome came back negative! What a huge sigh of relief that is! Not that Joubert is better to have than Prader-Willi; just in that we're finally getting comfortable with what Leyla's future could look like. And we're becoming more and more comfortable with our routine for her, learning what we need to do as parents to help her to develop and learn and grow to her potential. The thought of essentially starting from scratch was so overwhelming!
That's all for now!
Enjoy the sunshine today!
Jenni
so If PWS is negative have they been able to give you any idea what "IT" might be
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