A Mother’s Intuition: The Journey to Discovering Childhood Dementia Behind Autism

In the quiet Welsh town of Swansea, 34-year-old Tammy felt something wasn’t quite right with her son Tate’s autism diagnosis. While he was a happy and content child, his emotional expressions differed significantly from those of other children. As a first-time mother navigating parenthood during the pandemic, Tammy initially thought she was blessed with an exceptionally well-behaved baby who rarely cried and maintained a relaxed temperament. Yet, a persistent feeling that something more was happening beneath the surface never left her. Her maternal instinct kept whispering that Tate’s challenges extended beyond autism, pushing her to continue seeking answers even when medical professionals seemed satisfied with the initial diagnosis. This persistence would eventually lead to a devastating revelation that would forever change their lives – one that explained why Tate had never spoken his first word and why his development followed a different path than expected.

The breakthrough came in March 2024 when a CT scan revealed enlarged ventricles in Tate’s brain – a sign of childhood dementia. After years of questions and uncertainty, doctors finally confirmed that Tate had Sanfilippo Syndrome Type A, a rare and terminal condition often referred to as childhood dementia. This genetic disorder causes progressive neurological decline, where children gradually lose skills they once had. For Tammy, the diagnosis brought both clarity and heartbreak. It explained why Tate had never spoken, something previously attributed to his autism. The realization that she would never hear her son’s voice was devastating, yet the diagnosis provided answers to questions that had lingered since his birth. The early symptoms of Sanfilippo Syndrome often mimic autism so closely that misdiagnosis is common, creating a confusing and frustrating journey for many families before they receive the correct explanation for their child’s condition.

The progression of Sanfilippo Syndrome follows a cruel timeline. Children typically begin showing significant regression around ages 5 or 6, and by 8 or 9 years old, many require tube feeding and wheelchairs as their bodies and minds deteriorate. This knowledge has created a race against time for Tammy, who now understands that each developmental milestone Tate reaches may eventually be lost. The condition gradually takes away a child’s ability to walk, eat, and ultimately move at all. Perhaps most heartbreaking for Tammy is the knowledge that Tate may one day no longer recognize her – the mother who fought so tirelessly for his diagnosis and care. This reality has transformed their relationship and daily life, imbuing ordinary moments with extraordinary significance as they navigate an uncertain future together.

While there is currently no cure for Sanfilippo Syndrome, research efforts continue to offer glimmers of hope. In the United States, a gene therapy called UX111 shows promising potential, with possible approval anticipated by late 2026. Early trial results indicate that children who received this treatment experienced significantly less regression compared to those who didn’t. Though not a cure, this therapy could protect brain function longer, slow disease progression, and improve quality of life – potentially giving children like Tate more precious time with their families. For Tammy, this research represents not just medical advancement but the possibility of extending meaningful moments with her son before the disease takes its full toll. The challenge lies in accessing these treatments, which often requires international travel and significant financial resources.

Understanding the urgency of their situation, Tammy has launched a GoFundMe campaign to raise funds for potential travel to America where Tate might access experimental treatments. She has also turned to social media, sharing their journey on TikTok under the handle @tates.tomorrow to raise awareness about Sanfilippo Syndrome and connect with other families facing similar challenges. These efforts reflect her unwavering dedication to fighting for Tate’s quality of life in the time they have left together. The diagnosis has transformed Tammy’s role from mother to advocate and eventually to full-time caregiver as the disease progresses. Despite the overwhelming nature of this reality, she channels her energy into making each moment count while simultaneously preparing for a future that will demand even more from her as a parent.

Time has taken on new meaning for Tammy and Tate. “Time is of the essence,” she explains, knowing that Tate’s condition could dramatically change at any point. This awareness has fostered a bittersweet approach to daily life – cherishing present joys while preparing for inevitable decline. The journey from suspecting something beyond autism to confronting the reality of childhood dementia has been arduous, but Tammy’s intuition and persistence ultimately led to answers that, though heartbreaking, provide a roadmap for the care Tate needs. Her story highlights the critical importance of parental instinct in pediatric healthcare and the unique challenges faced by families of children with rare diseases. Through it all, Tammy remains focused on giving Tate the best possible quality of life for however long they have together, embracing their precious time while continuing to hope for medical breakthroughs that might change their future. For now, she lives fully in each moment with her son, knowing that tomorrow remains uncertain but today offers opportunities for connection and love that transcend the limitations of Tate’s condition.