I clearly remember the day I got the news I had Von Hippel Lindau (VHL). Both my brother Josh and I were both diagnosed with this disorder when the genetic testing came back. I was six years old and Josh was ten. We were both far too young to understand what it meant, but we would soon learn how it would change our lives. Though, we eventually found that the real journey for both of us started later in life -- when it really started to affect us. As kids, we had no clue what that meant for us, as it turned out, the rough road ahead was just the beginning. We both faced hard situations and have overcome different types of cancer and many surgeries. Dad was a big influence in both of our lives. Seeing him go through all those dangerous surgeries, year after year, gave us the fighting attitude we needed to get by in a life like ours. Unfortunately, that didn’t really make it any easier. I’m not sure what a “normal’ childhood looks like, but my entire youth revolved around seeing...
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