My name is Deb, and together with my husband, Jim, we are the proud parents of Daniel. From the very beginning, I sensed something was not right during my pregnancy. Despite being reassured repeatedly that everything was fine, I trusted my instincts and sought out a neonatologist. Each month, Daniel’s head measurements grew two weeks ahead while his body fell two weeks behind. By 34 weeks, he had stopped growing altogether. During my 37-week checkup, I was sent directly to the hospital for an emergency C-section.

Daniel entered the world underweight and unable to regulate his body temperature. Before we could take him home, he had to pass the car seat test—but he failed. That moment marked the beginning of a long and difficult journey to find out what was wrong.

As an infant, Daniel struggled with Failure to Thrive. He vomited frequently, suffered from severe constipation, and missed every developmental milestone. Despite my repeated concerns, it took persistence before doctors began testing him for underlying conditions. At age two, Daniel still could not walk or talk. I took him to specialists across disciplines—ENT, orthopedics, neurology—searching for answers. Finally, after years of uncertainty and multiple MRIs, we received a diagnosis: Alexander Disease.