The Butterfly Guild

While we were in Seattle, we had the great pleasure of meeting with a fellow SDS mom.  She has two children but her youngest who is 2 was just diagnosed a year ago with SDS.  We have been in touch this year through the email support group I belong to.  They live in Seattle so when she found out we were coming, arranged her schedule so that we could meet.  We hit it off right away.  Her and her husband have started a non profit organization to raise money for research in the area of Shwachman Diamond Syndrome.  I am a lousy fundraiser but am looking forward to helping her when I can.  If you would like to know more about the Butterfly Guild, you can visit her website at  If you want, you can also make a donation there. 

She was so sweet to the kids.  On Tuesday afternoon, a cookie bouquet was delivered to our hotel room from her and the family and was such a kind gesture.  We look forward to staying in close touch with her. It is always great to visit with someone who really does know what it feels like to be raising kids with a chronic illness such as SDS.  She really made our day with her thoughtfulness. They will be having a big fundraiser in February and our Oncologist will be the guest speaker.  She asked if Shelbie would also speak at the event so that is something that we will be looking forward to. 


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