Our community is reeling from recent news about our sweet friend, Sean Bowler. Unfortunately Sean had a fall last month that resulted in severe damage to his spinal cord. He and his family have been told by his doctors that he will never walk again. Sean is currently at Boston Children’s Hospital, on a ventilator, in the ICU.

Sean is a beautiful human. Several of us were lucky enough to meet him and his family in 2017, at our very first XGS family conference, and he burned a place deeply in our hearts. At that point in our history, Sean and Nathan, then aged 21 and 15 were the oldest known individuals with Xia-Gibbs Syndrome. And they carried that weight with such grace and humor. We learned so much from each other that weekend, including that Sean is a gentle, fun and thoughtful person, who felt immediately like family.

We could all feel the love in Sean’s friendship with his buddy Nathan. And we were full of tears as we witnessed their mothers, Amy Bowler and Jeanine Garcia, stand up and share their wisdom with those of us with younger Xia-Gibbs trail blazers. These two families and their strength, vulnerability, and ability to speak the truth left a life long impression on everyone present.