A three-year-old girl’s dreams of walking hand-in-hand ‘just like’ her healthy identical twin sister have been dashed after a last-minute U-turn by NHS bosses.
The parents of little Jasmine Moxom were told she was the “ideal candidate” for a free £30,000 life-changing op which would have allowed her to run and play with sister Summer.
The promised pioneering procedure helps to treat symptoms of spastic diaplegic cerebral palsy, and gave her and her family fresh hope.
They were told the decision was made because the surgery hadn’t been booked before the end of a free, NHS trial of the op.
Parents Sally Morton, 31, and Ricky Moxom, 26, are now desperate to raise the cash in time before they have to break the news to Jasmine that she may never be “just like her big sister”.
Sally said: “We feel like Jasmine has been robbed of a basic human right. What is the NHS there for if not to give a girl a life?
“Why shouldn’t Jasmine have it done when there are people who are ill because they’re obese or through drugs and drink getting treatment?
“Without the ability to walk, she will never be just like her big sister which is what she wants the most.
“She gets frustrated because she doesn’t understand why Summer can run around and she can’t. They’re identical in every other way.”
In a heart-wrenching video, Jasmine tells how she wants to “walk like Summer”, but when asked by Sally if she needs help, she replies, “No, I’m going to do it all by myself”.
Medics at West Suffolk Hospital told Jasmine in June last year she was the ideal candidate for a selective dorsal rhizotomy (SDR) operation to stop painful muscle spasms which mean she can’t even place her feet flat on the floor.
The procedure, which severs nerves causing the pain, means Jasmine would suffer less pain and free her of a life of pain killers, physio and operations.
Without treatment, she would be required to wear splints for the rest of her life and the longer she waits, the less effective the operation may be.
But despite her undergoing MRI scans and X-rays, and being referred to Bristol Hospital to prepare her for surgery, Jasmine’s parents were then told shortly before Christmas last year that her only hope of going under the knife is if they fund the treatment themselves.
They will then be required to shell out for further physiotherapy to strengthen the muscles in her legs.
“We held up our end of the bargain to find £3,000 to get her ready for the operation, which could now have been money for nothing if she can’t have this procedure,” said Sally.
“It’s not some kind of game we’re playing. This is our little girl’s life and we want to make it the best it can be.
“The NHS need to realise they can’t go promising children one thing and then take it away without a care, it’s disgusting.”
Jasmine’s family are now organising a series of fundraising events to try and raise the cash for the operation, which its hoped she will undergo shortly after she starts school in September.
Without it, she will be forced to watch Summer play with new friends who she can’t join in with, leaving her “cowering on the floor for fear of being stepped on”.
Sally added: “She has overcome so many obstacles in her life. They said she would be a vegetable but she sat up at 15 months and started to crawl just after her second birthday and I’m convinced Summer has been a huge part of her progress.
“We wouldn’t change Jasmine for the world but we know she will find it in her to walk one day, she just needs a little bit of help to get her there.
“We’re determined to do all we can to help Jasmine but we know Summer will be by her side with her every step of the day.”
A spokesman for University Hospitals Bristol NHS Trust said: “The Bristol Royal Hospital for Children participated in a national Commissioning through Evaluation exercise of selective dorsal rhizotomy (SDR) between April 2014 and April 2016.
“This process allows for evaluation of the effectiveness of new procedures before they are introduced as NHS treatment.
“We know that families value and seek out SDR treatment and, in line with the other centres that offer SDR, we are therefore continuing to offer it to families privately while the national evaluation takes place.”
A spokesman for NHS England said: “Current evidence is limited, but together with NICE we are exploring SDR further through our innovative evaluation programme which offers treatment to a limited number of patients who meet the clinical criteria.
“Not only does this enable these children to have potentially life-changing surgery, but it also provides a real opportunity to gather the vital evidence we need on the effectiveness of the procedure, for the benefit of our patients.”
To support Jasmine with her treatment, visit: https://crowdfunding.justgiving.com/sally-Morton