Israel endured so much in his short life. But even in the hardest moments, he brought so much light. One of my favorite memories from his transplant journey was how he never went by his real name. The first doctor we saw when he was admitted asked him his name, and Israel replied, “Batman.” From then on, he cycled through names from his favorite movies: Randall, Pascal, and eventually Lewis.

The Retreat for Adults with FA takes place every fall in a different city. It’s an opportunity for individuals with FA ages 18+ to meet other adults with FA, learn about medical and research updates, attend support sessions, and participate...