THIS is seven-year-old Alicia Jade Parks and her devoted brother Sebastian.
Brave Alicia suffers from a congenital condition which afflicts only one in 100,000 children.
It means she cannot walk, talk, feed herself or sit unaided.
She also suffers from cortical blindness, so her brain is unable to process what her eyes can see.
The Sandbach youngster's life is a precious miracle after doctors gave her only four months to live when she was born.
Seven years later, she is still battling the odds.
Her proud mother, Mandy Parks, said: "She is a very happy and jolly girl.
"She is cheeky, bubbly and bright - everything you'd want in a little girl.
"The paediatricians didn't think she was going to get past four months. We don't know what her life expectancy is."
Caring for Alicia is a real family affair for Mandy and father Neil, plus five-year-old Sebastian and daughter Samantha, aged 20.
Mandy believes Sebastian has effectively become Alicia's arms and legs with all the help he provides, while the people at Hope House Hospice have become a second family for the Parks thanks to their support.
Alicia suffers from Congenital Cytomegalovirus (CMV), which has caused disordered control of movement, visual impairment and developmental delay.
Although CMV is common, if a pregnant woman catches the virus it can be passed on to the foetus.
When this occurs, 90 per cent of children are perfectly healthy but five per cent will suffer serious disability.
Alicia's family spend a lot of time stimulating her senses using sound, light and toys to complement physiotherapy.
The Parks are now raising money for a specially-built pushchair, a £3,500 wheelchair and wheelchair ramps for a car, all of which would make a massive difference to family life.
Mandy explained: "They would help Alicia enormously as well as ourselves.
"I can't lift her and the wheelchair on my own so whenever we go anywhere I rely on other people.
"I don't know how we'd cope in an emergency. The ramps would be a massive help."
The Parks are certainly no strangers to fund-raising efforts and are continuing their own personal initiatives.
In the past, they have also received help from local Rotary organisations and the generosity of friends.
They are now appealing to the community for donations and any fund-raising ideas.
The family can be contacted on 01270 760684, or email lemans@parksies.fsnet.co.uk.
People can also send donations to the Crewe Guardian, 42 High Street, Crewe, CW2 7BN.
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