Parents of Hornchurch girl with Dravet Syndrome share story

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.

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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 paramedics will be looking it up on the way to the hospital."

The condition is still widely unknown (Image: Juste Pavliukeviciute)

Living with Dravet Syndrome is often unpredictable, and no less distressing even after several years.

Sometimes I sense if Sophia is going to have seizure," Juste adds. "Just small changes in her behaviour, but mostly it’s a surprise and we could be anywhere.

"Twice it’s happened in the car and twice in school. It’s very frightening and you panic.”

Nonetheless, there is hope. Sophia's seizures used to last between one to two hours, but new medication has meant she has not experienced a seizure in just under a year. 

Juste said: "It’s changed everything, we have so much more freedom now as a family. She is thriving at school and her behaviour is different, she’s so much happier.

Sophia has gone almost a year without suffering from an epileptic fit (Image: Juste Pavliukeviciute) "I want to help raise awareness because there might be other families where the child is not diagnosed yet, and who might be on the wrong treatment, or who could benefit from trying the drugs that have helped Sophia so much."

The family have been helped by Dravet Syndrome UK, a charity providing emotional, practical and financial support for more than 550 families with the condition. 

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Dravet Syndrom UK also funds research into the condition, aiming to help bring earlier diagnosis and access to treatments. 

Galia Wilson, chair and trustee of Dravet Syndrome UK, said: “Dravet Syndrome is a rare and devastating condition which has a huge impact on those affected.

"We are joining with families across the UK to raise awareness and share little moments of what it's like to care for someone with Dravet Syndrome so we can reach even more people in need of our vital support.”