Helena is 8 years old and lives at home with her parents, sister and brother. At sixteen months old, Helena was diagnosed by a Paediatrician with GDD (Global Development Delay), having previously had physio input, Hypermobility and low muscle tone, before being referred for further medical tests including basic genetic tests and a brain MRI.
During her toddler years, it became apparent that Helena had severe learning difficulties, including significant speech and language delay. Helena was enrolled on the nationwide genetics study, Deciphering Developmental Disorders (DDD).
At 3 years old, Helena received an ASD diagnosis and in autumn 2017, it was confirmed that Helena has been diagnosed with SYNGAP1. Since the age of 3, Helena has displayed behaviour difficulties which became significantly worse since the age of 5.
At 7 years old, Helena received additional diagnoses of Epilepsy, ADHD and Anxiety. In 2021 Helena was diagnosed with Sleep disorder.
During the last few years, there have been further developments in Helena’s behaviour and disposition.
Since 2019, we have witnessed a huge deterioration in behaviour and temperament.
Helena is unable to express her emotions other than by having violent outbursts of rage, accompanied by spitting, coughing, screaming, kicking and hitting. This often results in her harming property, hurting others, as well as self-harming.