Ella is a very special young lady. Her mutation is unique in function in all the world, causing a different gene expression. While she still shares many of the symptoms of TBCD with her peers, she is very lightly affected and is capable of (and enthusiastic about) self-advocacy! We are so excited to have her in the community to speak loudly and proudly for herself about having TBCD and her quest for the cure.
She writes, "Don’t give up on anything, even you have disabilities, delays or even anything, don’t push yourself to make you look better. Be the person that you are today." She wrote in her middle school graduation yearbook that she plans to pursue finding a cure for TBCD and refers to the younger children with TBCD as her little brothers and sisters.