Lucas was an amazing source of joy. Despite fighting for survival in the face of a severe genetic and neurological disorder that limited his voluntary motor movement and speech development, he continued to meet each day and each individual in his life with wonder and happiness. His eyes and facial expressions spoke volumes, and all his caretakers and friends knew him as the sweetest boy. Maybe it was just how he'd bat his huge eyelashes, but his courage inspired all around him to seek peace and consolation even in their most dire times.

Lucas, who was just 9 years old, passed away quietly yesterday afternoon after bravely living with FOXG1 syndrome. Because of his condition, he was denied life insurance, leaving our family unprepared for the sudden expenses of funeral and burial costs. Our family also recently lost an infant daughter, and the expenses for her funeral depleted our savings. These unexpected financial challenges have made this time even more difficult for us.

We are already tremendously grateful for all the friends, neighbors, and extended family who have supported us, especially Lucas' healthcare team. Their selfless devotion has helped keep our family moving. As we look to the FoxG1 and greater community for financial support, please know that your donation helps provide a final peace of mind for our family as we honor Lucas's memory.