Jessica Cowley, once an active and outgoing teenager from Maesycoed, began experiencing severe mobility issues around 2020, which rapidly worsened over the following years. Despite multiple medical consultations, her symptoms—such as leg pain, frequent falls, loss of speech, inability to eat unaided, and dementia-like signs—were initially misdiagnosed or dismissed. After a prolonged five-year struggle for answers and what her family describes as inadequate NHS care, Jessica was finally diagnosed with Dentatorubral-pallidoluysian atrophy (DRPLA), a rare, progressive brain disorder that severely impairs movement, cognition, and emotional health. By the time of diagnosis, Jessica’s condition was advanced, leaving her largely wheelchair-bound with only a few years to live.

The Cowley family is grappling with the devastating news and the impact of the delayed diagnosis, which prevented Jessica from accessing clinical trials and limited their ability to create lasting memories. They have criticized the healthcare system for missed symptoms and poor coordination among health boards. Now, they are focused on raising awareness and funding for DRPLA research, hoping to improve outcomes for others and potentially screen Jessica’s siblings earlier. Despite the challenges, the family is committed to making joyful memories with Jessica, celebrating her interests, and keeping her engaged as much as possible during her remaining time.