Christopher and family just returned from Clearwater, FL for the Barth syndrome conference. There, he was able to participate in crucial research in advancing towards a treatment (or better a CURE) for BTHS, he was able to fellowship with his Barth brothers in treasure hunts, building sand castles, dancing, watching sunsets, making crafts and dressing up as their favorite super hero at the largest gathering of heroes ever (that was so much fun to plan!), just to scratch the surface. He made new friends and reunited with old friends. He was able to rub elbows with the scientists who are working fervently to understand this complicated disease. We were able to participate in break out and educational sessions and refresh our CPR skills. We were able to watch first hand the most beautiful tribute to the boys affected with BTHS, past, present and future. He was able to see family for the first time ever. He did become unwell just after a couple of days in, but all things considered, he was so tough, telling us the whole time he felt fine so he could catch up with his brothers. If we didnt see you (or much of you), that is why! We are already counting down the 24 months until we meet again! Here are a few pictures from his trip.
Posted on: Mon, 30 Jun 2014 21:56:47 +0000
Trending Topics
Recently Viewed Topics
© 2015