Over the weekend Bill flew out to Virginia to attend the FightSMA board meeting. We have been working with this SMA organization for nearly a year and a half through our PetitionToCureSMA.com campaign and they are enormous advocates for the SMA Treatment Acceleration Act. Thanks to their tireless energy, perseverance, and constant meetings on Capitol Hill (armed with the petition data), we are truly hopeful this important bill will be passed this year! (Psssssst, please sign the PetitionToCureSMA.com if you haven’t already!) It is an honor to be working even more closely with them now that Bill was invited to be a member of their Board of Directors. But, as much as he wanted to go, this was the first time Bill has been that far away from us since Gwendolyn’s diagnosis. We were all nervous — especially Bill. It was a big step for all of us, but a good one.
While Daddy was away, Gwendolyn and I were busy bees. On Friday, I drove to Marina’s house for a play date, which meant driving with Gwendolyn on the freeway for the first time by myself! On Saturday morning we went to Reese’s birthday party, got to hang out with friends, play music, eat brightly colored cupcakes, and sing “Happy Birthday” to a very serious birthday girl! And on Sunday, Daalia came over for some morning coffee talk. Oh, and we practiced the power chair a lot! It was a fabulous weekend and thanks to the help of two wonderful ladies (E & D), I knew we’d be okay.
The second Bill walked through the door, Gwendolyn wanted nothing but Daddy hugs (Mom was chopped liver!), but I don’t blame her — he’s pretty great!
About Victoria
