But her life has not been easy. She was just nine months old when she had her first epileptic seizure, and was diagnosed with Dravet Syndrome - a rare form of the condition - aged two. She is now seven, and after more than 40 'blue light' dashes to hospital and eight stays in intensive care, her parents Juste Pavliukeviciute and Shakil Shinvari hope the Hornchurch girl's life has turned a corner.
Mum Juste remembers when Sophia was diagnosed. She said: “I’d never heard of Dravet Syndrome and the consultant said to look it up online and I did, and what I read was so frightening." Sophia also suffers from a learning disability linked to Dravet Syndrome (Image: Juste Pavliukeviciute) Caused by a mutation in a single gene, Dravet Syndrome occurs in around one in every 15,000 children and is one of the hardest forms of epilepsy to treat.
Those affected commonly have multiple seizures throughout the day and night, and are at a much higher risk of dying suddenly and unexpectedly. It is life-limiting and may bring learning disabilities and conditions including autism, as well as speech, mobility and feeding difficulties. For parents like Juste and Shakil this brings a heavy burden - and they have found even medical staff may know little about it.
Juste said: “ Over the past seven years, we have probably called 999 well over 40 times and it varies how long she is in hospital. She has been in intensive care eight times. "Often the medics we see haven’t heard of Dravet, and the .