Esme campaign gathers pace as cash flows in
LIKE a pearl in a shell, Esme Clark was so tiny when she was born that her dad could easily cradle her in his palms.
Born more than ten weeks premature weighing 3lb 4oz, Esme, who has cerebral palsy and cannot walk, has had to fight for survival from her first gasp of air.
And now the three-year-old is preparing for battle again as she faces a major operation in America that will give her the chance of escaping a lifetime in a wheelchair.
But in order to get that chance, Esme’s family needs to raise £50,000 and time is running out because they have just three weeks left to do it.
Last week the Standard pledged its support for the family by launching the Esme's First Steps campaign and within hours donations had shot up from £8,000 to more than £31,000 towards the mammoth target.
Parents Alison and Laith, from Whelford near Fairford, said they have been overwhelmed by the brilliant response and have even been stopped in the street by local people wanting to give support.
"I can't walk by myself. I'm going to America so I can learn."Esme Clark, aged 3
Mum Alison, 41 and dad Laith, 40 said they could not be more proud of their beautiful girl.
Esme nearly died at birth because her skull had not developed properly and she suffered a brain haemorrhage, which caused her to develop cerebral palsy.
Alison said: "She was in intensive care when she was born and the doctors told us to prepare for the worst.
"We tried for two years to have Esme. She pulled through somehow and is just the most precious thing to us."
She explained that it took over a year for doctors to tell them their only child had cerebral palsy and would never be able to walk.
"It was like grieving when we found out," Alison said. "You realise that she's not going to be able to do things like walk to school or ride a bike - things I loved doing when I was young."
Former marketing manager Alison gave up work to care for Esme full time.
Although the Fairford Pre-School pupil is giggly, bright and outgoing, her disability means she is not able to walk, stand or sit without a special chair and needs constant support.
Now Esme is growing up, her frustration at not being able to dance or skip with her friends is a cause of daily heartbreak for her mum and dad.
"She’s becoming more aware of the things she can’t do and it upsets her," Alison said.
So Esme's parents have taken the brave decision to put their daughter forward for five hours of spinal surgery, which will give her more control over her leg muscles.
The operation, called selective dorsal rhizotomy (SDR), is not available on the NHS and although it is now available privately in the UK, it is only performed in America for children as young as Esme.
Alison said a last-minute cancellation came up at St Louis Hospital in Missouri with the doctor who pioneered the surgery and they felt they had to grab the opportunity.
"We didn’t know how long we would have to wait otherwise and Esme would have the very best," she said.
Mum and dad both know that the operation will not be like a magic wand; that life is not like a Disney film.
And Esme will have to work hard after the operation to build up her movements from scratch like a newborn baby.
But knowing their strong-willed girl they are hopeful that she will one day take her first steps.
Esme said: "I can't walk by myself. I'm going to America so I can learn."
How you can help little Esme to raise £50,000 for her first steps
* Make a donation at milesforesme.com or at the Fairford Pre-School collection bucket.
* Support Esme's Auntie Lizzie and Uncle Joffey in their fundraising Yorkshire three peak's challenge at milesforesme.com
* To hold your own fundraising event, contact the Clarks family at milesforesme.com
What is cerebral palsy?
* Cerebral palsy is caused when the brain does not develop normally or is injured very early in life, usually while the child is in the womb or at birth.
* Each person with cerebral palsy is affected in a different way, but the condition usually results in problems in movement, posture and co-ordination.
* An estimated one in 400 children has cerebral palsy and around 2,000 babies in the UK are diagnosed each year.
* Premature and low birth-weight babies are 50 per cent more at risk of developing the disability.
* First signs of cerebral palsy include very tight or floppy limbs and balance problems and can be recognised either immediately or several months after birth.
* A common misconception is that people with cerebral palsy have learning difficulties. Just as in the general population, there is a huge range in intelligence.
* There is currently no cure for cerebral palsy, but there are treatments and therapies available to reduce the impact of the condition.