The week of the Fighting Blindness Vision Walk there was the Bardet-Biedl Syndrome (BBS) conference which is held every two years. Hopefully, we will be able to attend the next one! It would be so neat to meet all of these amazing BBS parents and not just through emails, facebook and the phone. It would be such a blessing to learn more about BBS from the experts on the syndrome. But, as I read this I feel the exact way as my friend. It just makes me feel paralyzed and so sad every time I realize how real that my children will likely become completely blind. It truly is like a dagger to my heart, just as Shawni said. But, we are trying to be on top of everything as best as we can, and love our children with every being of our hearts.
71 Toes: BBS conference at Duke University: So Dave and I went on a “date” to the BBS Conference at Duke University in June. It was kind of a pre-anniversary, pre-father’s day thing. ...
No comments:
Post a Comment