Meet Wiley, an Angelman syndrome warrior

by Chloe Knouff

Meet Wiley, a vibrant six-year-old who faces life with unwavering determination despite living with Angelman syndrome. Wiley’s life began typically, but around five months old, it became apparent that he was missing developmental milestones. Doctors initially dismissed his parents’ concerns, attributing his delays to a “wide range of normal” development. However, persistent clues like feeding difficulties, unpredictable sleep, and poor eye alignment hinted at something more significant.

Finally, at 10 months old, Wiley received the diagnosis of Angelman Syndrome, marking the start of a challenging yet inspiring path. Despite facing hurdles like seizures, learning disabilities, and sleep disruption, Wiley has made remarkable progress, achieving his goals. He took his first steps just before his fourth birthday. Wiley finds ways to communicate his wants and needs despite lacking verbal speech. He attends school and thrives because of Individualized Education Plan (IEP), tailored to his unique needs. Extensive therapeutic intervention, adaptive equipment, dedicated doctors and therapists, and an incredible amount of resilience are all required for Wiley’s success.

Thankfully, Wiley and his family aren’t navigating this journey alone. The Angelman Syndrome Foundation (ASF) provides invaluable support, offering specialized clinics, educational support, and financial assistance programs. From safety beds to adaptive bikes, the ASF ensures families like Wiley’s have the resources they need to thrive. By funding research and championing community support, the ASF is dedicated to enhancing the lives of individuals with Angelman syndrome and their families. The ASF’s high-risk, high reward research strategy and made incredible progress in bringing safe and effective treatments for Angelman syndrome into clinical trials. The future of individuals with Angelman syndrome, like Wiley, is bright and the Angelman Syndrome Foundation is committed to being with families for the journey from infancy to adulthood.

Chloe is the Community Engagement Coordinator at the Angelman Syndrome Foundation, and mom to Wiley.