The family of a six-year-old girl are trying to raise £21,000 for an operation to help her walk unaided – after the NHS refused to fund the life-changing treatment.
Little Skye Twyford weighed just 3lb 10oz when she was born 12 weeks early and spent the first three months of her life in hospital.
The schoolgirl, who uses a wheelchair, has cerebral palsy and can only shuffle short distances with the help of a walking frame.
Last July doctors told Skye’s family the youngster was suitable for selective dorsal rhizotomy (SDR) which could help her walk unaided.
But the pioneering operation is no longer funded by the NHS following a safety review.
Skye’s family blasted the NHS and urged people to support their campaign to raise £21,000 to pay for the treatment themselves.
Mum-of-two Bernadette Twyford, 50, who lives with Skye in Bucknall, Stoke-on-Trent, Staffs., said: “Skye walks with a frame and although she can stand for about two to three seconds on her own she cannot walk by herself.
“She has had botox injections to relax and stretch her muscles but they’ve tightened back up now.
“The operation will cut nerves which will stop messages going to her legs to tighten up.
“After the operation she will have to learn how to walk again because her legs will be able to hold her body weight to walk.
“I am angry this procedure is not available on the NHS and that we have to raise £21,000.
“We will be treated at an NHS hospital but I will still have to pay.
“The most annoying thing is you can get boob jobs or tummy tucks on the NHS but they are just cosmetic.
“Skye needs this operation to make her walk and there are other children like her who need it as well. That’s way more important than a boob job.
“I just think it is wrong. Children are the future of our country and if we can’t help them then what chance have we got.
“I am annoyed we have to raise the money and I don’t know how long it will take to raise that amount.”
The selective dorsal rhizotomy treatment would reduce the stiffness in Skye’s muscles and allow her to walk freely.
Brave Skye said : “We’ve got to raise £21,000 for my operation.
“My mummy and my brother and friends have climbed up Mount Snowdon to help us raise money.
“After the operation I will be able to walk better and play with my friends.”
Gran-of-four Bernadette and her son Adam Jordan, 31, have already climbed Mount Snowdon as part of the family’s fundraising appeal which has reached £3,000 so far.
The dad-of-four said: “Skye and I are very close. She comes to all Port Vale’s matches with me.”
Skye has been referred to Liverpool’s Alder Hey Children’s Hospital for the selective dorsal rhizotomy (SDR) procedure.
Alder Hey neurosurgeon Benedetta Pettorini said: “Cerebral palsy tightens a person’s muscle control and restricts their movement.
“It is an extremely complex condition, every child is different and should be treated individually.
“SDR is still very new and not currently available on the NHS. This high-risk pioneering surgery is not appropriate for every child and involves intensive rehabilitation.
“It can be very beneficial in some cases, potentially reducing spasticity, increasing range of motion and improving body positioning.”
The SDR procedure was carried out on the NHS for a limited number of patients between July 2014 and the end of March after expert evidence “suggested the
procedure was safe”.
The results of those operations will now be evaluated over the next two years to see if SDR should be provided more widely.
An NHS England spokesman said: “The current evidence is limited, and together with NICE, we are exploring SDR further through our evaluation programme.
“It will allow us to gather the vital evidence we need on the effectiveness of the procedure, for the benefit of our patients.”
Anyone who wants to donate to the family’s fundraising appeal can visit – https://www.justgiving.com/crowdfunding/adam-jordan
