Jill Woodworth

Cecilia Pratt, reached out via Facebook to share her lived experience of a TSC diagnosis in her son and former husband. She clearly depicts how it felt to receive this heavy diagnosis download in a dermatologists office, based on skin symptoms and delivered with minimal compassion and little information, back in 2005. From here they found a TS Clinic in CA , but again Cecilia was not given the answers she needed about managing TSC and was extremely discouraged. Moving from CA to Baltimore MD, she was finally able to find a clinic and team that was able to offer hope at the Kennedy Kriger Institute. In Part 1 Cecilia gives us a moving account of the inner experience of a mother continually swimming upstream and trying to stay afloat with little support while managing some of the fiercest manifestations TSC can dish out. Intractable seizures, extreme behavior challenges, and IEP non-compliance litigation are just some of the struggles she outlines over the course of these episodes. Cecilia refuses to allow