A Shining Light of Hope and Change for the Future

By Brandon Crawford

Reaching from my earliest memories, I can remember growing up being just “different.” Having friends wasn't always as easy because I was more or less separate. I would get tired so often, had to have extra snack times at school, and take naps. Plus, I didn't look like everyone else.  I was never a recipient of the coveted perfect attendance awards, always going to the doctors and having x-rays, scans, and echos. I even had surgeries here and there.

One of my fondest memories was the yearly Marfan summer conference where I could hangout and play with kids my age that understood me. In 2005, we were at one of those conferences and my mom and dad were sitting at a table listening to Dr. Dietz discuss this new condition and about testing. Mom and dad remember poking each other and saying “that's Brandon he's talking about.” We did testing during that conference and later did genetic testing that led to my Loeys-Dietz syndrome diagnosis.

I like to tell people I'm one of the first in the world to be diagnosed with Loeys-Dietz syndrome. In 2006 I had my first major surgery, a valve sparing aortic root replacement. In the last 15 years I have enjoyed getting to know new patients and gaining life-long friends, lasting relationships. I've learned to be a shining light of hope and change for the future. I can't wait to see where we go from here. Just remember, in 2020 we can only go up from here.

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Your gift helps the Loeys-Dietz Syndrome Foundation expand the tools and support for families like Brandon’s facing a Loeys-Dietz syndrome diagnoses. Your support will directly impact all children and adults affected by Loeys-Dietz syndrome and have a lasting effect for generations to come.