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.

Everything we do at the Fanconi Cancer Foundation (FCF) starts with the individual, because understanding the lived experience of FA is essential to improving care, advancing research, and strengthening support. As gene therapy and other promising treatments move from clinical...