When Isla was nine years old she was accepted into UDN. Within one year, Isla was diagnosed with CDKL5. Ironically, Isla was specifically tested for this disorder when she was a baby and her genetic tests never revealed this mutation. We have navigated Isla and her special needs for nearly a decade before getting her diagnosis. In some ways it changed nothing, she will never be defined by her medical labels, and changed everything, because we now know. We now know her symptoms are due to a random mutation and not inherited. We now know that our son is not a potential carrier. We are still navigating this new world. We would not have had the opportunity to know about Isla’s genetic diagnosis without the UDN. I am proud to be part of this community with my perfect girl.