HI. MY NAME IS HELENA

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.