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More on KentOnline
A little girl unable to walk, crawl or sit on her own has got the chance to have ‘new legs’, but it will cost her family around £50,000.
Faye Jibreen, three, was born at 28 weeks weighing just 1.2kg and being such a small baby and having suffered complications, she spent the first two months of her life in a neonatal intensive care unit.
Her mum, Suhir Eloush, from Maidstone said: “When she came home, I started to notice a few things I wasn’t sure were normal.
“I kept asking at her check ups but I was told it was fine and not to worry.
“It got to a point where she started to have what looked like seizures at about seven months old. She had two EEGs (electroencephalogram) and they came back fine.”
Faye also had an MRI scan and Mrs Eloush and, her husband Anees Jibreen, were told she had cerebral palsy and she would need physiotherapy, potentially, for the rest of her life.
“At that point it was hard to know how severe it would be.
"Now at three years old she can’t sit or stand alone, she is non-verbal and we aren’t sure how well she can see either." Mrs Eloush added.
Cerebral palsy is broken down into different types, depending on how damage to the brain has impacted overall mobility.
The 35-year-old explained: “For Faye it is predominantly her legs.
“Her movements are jerky and exaggerated, her legs are extremely stiff, and her muscles are tight.
“It takes all my power to be able to bend her leg sometimes.
“We aren’t sure about the pain, it’s hard to tell because she can’t tell us.
“We just try to make sure she is happy, to whatever degree we can.
“She loves music. She can’t sing, but she loves humming along to the Peppa Pig song.
“Faye is a happy little girl, she doesn’t know about the things she can’t experience.
"In that respect it’s good but of course it would be great for her to enjoy things like her sister can.
“She is the sweetest girl and she deserves everything.”
The family has had to come to terms with Faye’s condition.
Mrs Eloush added: “I would do anything to swap places with her.
"You just take for granted being healthy, she is just a tiny little thing and she is so happy.
“Her older sister Ayla, four, has never known Faye to be able to play.
“She does ask if Faye will be able to play with her and that is difficult but she understands.
"She does physiotherapy on her dolls.”
The family have taken the toddler to various therapies but about 18 months ago a pioneering surgery, called Selective Dorsal Rhizotomy (SDR), was mentioned.
The procedure, which can take an average of eight hours, involves cutting some of the nerves connecting the muscles to the spinal cord.
It aims to reduce spasticity, a condition where certain muscles in the body are continuously contracted.
Despite it being available on the NHS, Faye does not qualify for the treatment. But she has been accepted in the USA.
The personal assistant added: “Imagine if it enables her to walk, she would be like a new person.”
Conducted at St Louis Hospital for Children, in Missouri, USA, the surgery is expected to cost between $40,000 to $60,000, which equates to about £30,000 to £50,000.
Mrs Eloush said: “In the UK, when you talk to doctors, you ask them a question but you always get told ‘I don’t know’, and they never commit to an answer.
“There is no hope for anything, and when you walk out you never know what the future holds.
“The cost is obscene but there is nothing I won’t do for my children.”
Experts believe Faye’s spasticity, balance and posture will improve. They feel she would be able to walk using a walker.
“That was just so positive and hopeful,” Mrs Eloush added. “If she has this surgery done we have given her the best chance at life.”
Due to the extreme costs her family set up an online fundraising page, called ‘Amazing Faye and her new legs.’
Mrs Eloush added: “I was unsure to begin with but then my brother said he wanted to raise money and my friends wanted to help.
“I wanted it to have as much information as possible because a lot of people do not know what cerebral palsy, or SDR is, unless they are affected.”
