Isidora Dyer, 14, who is fighting severely debilitating Rett syndrome, and her mum Etta Bonugle, "dad" Andy Bonugli and brother Somerset, 17, at home in Minster
Looking after Isi is a 24-hour-a-day, seven days a week vocation for her family. It demands great love, dedication and attention to detail.
Isi is 14 and has Rett syndrome, an incurable and progressive condition. It is described by the Rett Syndrome Research Trust (RSRT) as a coming together 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, step-dad Andy and brother Somerset, 17.
Isi sleeps very little. She frequently panics when she wakes. This can lead to severe fits and seizures and a life or death resuscitation scenario.
At home, there is medical equipment to keep Isi alive, including machines to breathe for her and clear her airways.
Because of their care, Isi’s family won a Ward and Partners award for their courage, at the 10th ceremony in 2012. Etta said it was “like a little ray of sunshine” after a particularly tough time.
In 2011, Andy and Etta went through hell when Isi suffered a major setback, landing in intensive care in London for six months. Her parents barely left her side and resorted to camping outside the hospital in their car.
Isi and her brother were born in Greece. Etta was a single mum, working as an agent for a tour operator. Etta 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 developed, leading to marriage.
Meanwhile Isi attended the specialist Aspen unit in Dover. She was unable to take a place at St Nicholas School, Canterbury, so her family decided to home-school her. Since 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.
Meanwhile, Isi can read fluently and has a dark sense of humour. She is fascinated by archaeology, and ancient civilisations and loves music, particularly if it’s loud.
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.”
RSRT is a highly proactive organisation, making regular breakthroughs and offering fresh hope for Isi and her family.
The family raise as much money as they can for the organisation. Etta makes cakes for friends with 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 enter this year's Ward and Partners Children's Awards, visit kentonline.co.uk/wardawards