...Life After Chase…January 30, 2010 by Victoria Strong
We'd be lying if we said the last week was a big party. While we are so, so proud and beyond thrilled with the outcome of this exciting contest, when the cheering stopped we still had to give Gwendolyn a breathing treatment and put her to bed and watch her oxygen levels and look for any signs of distress -- and so did thousands of other families. And thousands more went to bed with a crib that is still empty and painfully silent. The dichotomy of the adreniline and the hope next to the stark reality of this cruel disease is difficult to avoid. We are focused on continuing to fight for a cure -- we are determined. But, if we are honest, there have been many emotions accompanying that unending pursuit to change the landscape of SMA. We have always lived by the philosophy of aiming high because mediocre doesn't create change and that has never been more true than now...but, it is leaving us feeling impatient. We want to do more, reach more people, fund more research...end this disease...now!
In Gwendolyn news, she is very glad to have Mommy and Daddy back. We have been taking walks and reading books and spending the rainy days snuggling. Today, the sky was gorgeously blue and we got to go to a special birthday party for our sweet three-year-old neighbor, Addy. Gwendolyn loved watching the bouncy house, the pinata, and the bubbles. She got a little jealous of the birthday song not being for her, but we are working on that It was so nice to be out together as a family...the three Musketeers! Gwendolyn is our special little girl, our entire life -- and we just wish SMA were cured already!!!
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Are You An SMA Carrier? Advocating for the Affordable Care Act: Gwendolyn's Story (Video) It Arrived!!! Let the Adventures Begin!
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