Looking after Isi is a 24-hours a day, seven days a week vocation for her family. It demands great love, dedication and attention to detail and is without respite.

Isi Dyer is 14 and has Rett syndrome, an incurable (so far) and progressive condition.

Rett syndrome is described by the Rett Syndrome Research Trust (RSRT) as a coming together in “one little girl” of the symptoms of autism, cerebral palsy, Parkinson’s, epilepsy and anxiety.

Isi is unable to speak, has little mobility, cannot support her own body, is fed through a tube, has few motor movements and is totally dependent on mum Etta, dad Andy and brother Somerset, 17.

They look after Isi with devotion, striving to give her the best chance of beating the grim condition’s disabling restraints. They live on tenterhooks.

Isi sleeps very little. She frequently panics when she wakes. This can lead to severe fits and seizures and a life-and-death resuscitation scenario.

At home, there is medical equipment to keep Isi alive, including machines to breathe for her and clear her airways.

Etta and Andy are Isi’s fulltime carers around the clock.

Going any distance from home, away from essential life support equipment rarely happens.

Because of their care, Isi’s family won a Ward and Partners award for their courage at the tenth awards ceremony in 2012.

Etta said it was “like a little ray of sunshine” following a particularly tough time.

Isi and her brother were born in Greece. Etta had been a single mum, working as an agent for a tour operator.

She had realised something was not right with Isi and moved back to the UK to ensure she could access good paediatric facilities. In 2002, Isi was diagnosed.

Etta and Andy had known each other since they were 11 at Dane Court Grammar School, Broadstairs.

They were reunited and their relationship escalated to a new dimension and marriage.

Meanwhile Isi successfully attended the specialist Aspen unit in Dover. She had a place to go on to at St Nicholas School, Canterbury, but the school could not cope with her medical needs.

In 2011, Andy and Etta went through hell when Isi suffered a major setback, landing in intensive care in hospital in London for six months. Her parents barely left her side and resorted to camping outside the hospital in their car.

Since this July she has been flourishing with a mainstream home tutor.

Isi can just about use her knuckles to type. Her family are hoping “eye-gaze” systems for android tablet computers will give her far more scope and control.

Ensuring she is as stimulated as possible is a vital aim.

Meanwhile, Isi can read fluently and has a dark sense of humour. She is fascinated by archaeology, and ancient civilisations, loves music, particularly if its loud, and especially Lady Gaga, Jessie J and the Sex Pistols.

A great new chapter opened when she joined the Guides near her home in Minster, Ramsgate.

Etta and Andy go with her as helpers. Sometimes a friend comes home.

“Anything she can’t physically do, the other girls help her with,” said Etta. “They just accept her as she is. For Isi, it is sheer joy. It has been absolutely brilliant. The girls love pushing her chair.”

RSRT is a highly proactive organisation, making regular breakthroughs and offering fresh hope for Isi and her family.

Etta said: “The research is going by leaps and bounds.”

The family raise money as much as they can for RSRT, hoping for light at the end of a dark tunnel. Etta makes stunning cakes for friends, all profits go to RSRT. They also walk long distances, albeit up and down the stairs at home, to raise funds.

Her mum said: “What Isi has been through is so tough, but she is still smiling.”

To nominate somebody in this year's awards visit kentonline.co.uk/wardawards

There are categories for Triumph Over Adversity; Young Fundraiser; Going for Gold (achievement in sports or arts); Exceptional Carer; Courageous Family and Outstanding Charity.