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Story about Beckwith-Wiedemann Syndrome .

A Beckwith-Wiedemann Syndrome story

Apr 20, 2016


My daughter was born with BWS hemi in August 1992. 5 1/2 weeks in NICU due to very low blood sugar. Took out 95% of her pancreas and she has had normal levels ever since. Surgeries later for tonsils/adenoids removal, 2 for lazy eye, stopped bone growth on a toe then her right knee. 2 surgeries for large juvenile fibroadenomas removed.  She is 23 and had her tummy scar fixed recently. Hopefully the last surgery!

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