Alycia Ellis, Jack Pike and Robbie Davies all have cerebral palsy and need the same life-changing operation to enable them to walk.

The operation, called selective dorsal rhizotomy, is available at Frenchay Hospital in Bristol.

However, two of the children have been refused the operation on the NHS, and the third’s family are waiting to find out whether he will be accepted.

Their families need to raise approximately £50,000 each for them to have the operation done privately, with some even considering having the surgery carried out in America.

This week, the Adver will be talking to each of the families to find out what they are doing to fundraise, how they feel about being refused treatment on the NHS and how the operation would change their lives.

WHEN mum Kelly Cummings was told the NHS would not pay for an operation to enable her son to walk because it was not “cost effective”, she refused to accept it.

Instead, the mum-of-three set about researching cerebral palsy and the care her six-year-old son Corey currently receives.

A Freedom of Information Act request revealed that if Corey were to receive the same physiotherapy, botox and care from an orthopaedic consultant and community psychiatrist he now receives until the age of 21, it would cost the NHS a total of £33,600.

Yet a selective dorsal rhizotomy, the same operation required by youngsters Alycia Ellis, Robbie Davies and Jack Pike, is now available at Frenchay Hospital, in Bristol, and would cost approximately £24,000.

However, Corey has been denied the operation on the NHS. But Kelly has had an appeal against the ruling upheld, despite a mix-up meaning the panel had not even seen the evidence and research he had collected.

He has already had an assessment with the neurosurgeon at Frenchay and is waiting for an assessment by the team of specialists.

Kelly, 34, of Coate, who has started a physiotherapy course at college because she is so disappointed with the physiotherapy received by her son, said: “This is a child we are talking about and he has his own life ahead of him.

“I look at things like gastric bands, or hip replacements for older people that are available on the NHS and of course if it was my nan I would want her to have it, but how can they say from looking at him that he shouldn’t have this operation?

“He could have 80 years ahead of him, how can it not be cost efficient? This is his quality of life we are talking about.

“What is the point in the NHS when you can’t get something like this for a child?”

Corey, who has two older sisters – seven-year-old Amber and 13-year-old Briony, attends Lawn Primary School and, on top of his studies, he goes to Beavers and plays for a disabled football team.

Kelly said: “He has been playing football for a year now, he mainly plays in goal, but he enjoys it.

“He is also the first physically disabled person they’ve had at Beavers, and he goes to dance with his sister as well and he joined in with their Christmas show.

“He is a strong character but he gets frustrated when he can’t do things and says it’s not fair. It’s hard explaining to him that he can’t do certain things and he doesn’t cope very well with that.

“It impacts on his school work – he has to have someone to go to the toilet with him and he is starting to get to the age when he is embarrassed because nobody else has to have someone with them but it is for his safety.”

Kelly and husband Richard, 45, a roofer, have applied to Caudwall Children’s Charity which they hope will help them with fundraising so, if successful in their appeal, Corey can have the operation at Frenchay. To support the family, call 07799 484536.

Hope of normal life

Parents Kelly and Rob Davies were distraught when they found out six-year-old Robbie had been refused NHS funding for the operation. Mum, Kelly, of Lower Stratton, describes their experience so far

ROBBIE suffered a brain haemorrhage when he was born nine weeks prematurely and when he was 10 months old we found out he had cerebral palsy.

As a family we all found this hard to deal with because Robbie’s 11-year-old sister Emily also has cerebral palsy, so we couldn’t believe we have to go through it all again. As a family we all stick together.

Robbie attends Robert Le Kyng Primary School and is in top sets for everything. He is such a clever little lad all he wants is to go out to play with his brother and kick a football, or go to the park and play without other children treading on him.

He always says ‘mummy and daddy I get so upset because I can't walk.’ It breaks our hearts hearing this.

The SDR operation would mean everything for Robbie.

We have to carry Robbie around a lot to the car, or upstairs if he wants to play with his sister – which gives me a lot of back pain.

Robbie had physiotherapy over the Easter holidays and we were told if Robbie does not push himself up better on his feet, he is not going to walk at all. After hearing this, I walked out into the kitchen crying and told my husband, Rob, to take over.

My husband has always been in employment paying national insurance and tax we find it disgusting that Swindon NHS are stopping Robbie from having the SDR operation. Now we want something back, our son to walk.

Robbie is the most loving and caring boy, he just needs this operation for him to have a better life.

It would be amazing for us all as a family to watch all our four children run around together.

We were told by the surgeon in Bristol that Robbie could be walking in his walker six to 12 months after the operation, so please help us to give the chance for our child to have a normal life.

Paul wheels into action

CLIMBING a hill on foot can be a challenge for most people. But for motor neurone disease sufferer Paul Wilkinson, as if climbing a hill in his wheelchair wasn’t tough enough he went one step further yesterday when he climbed Victoria Hill in his wheelchair, backwards.

Paul, 65, of Moredon, pledged to complete the challenge and donate £1,000 to the family of Alycia Ellis.

Cerebral palsy sufferer Alycia, six, of Abbey Meads, needs £50,000 so she can have an operation in America to enable her to walk.

At the moment, she cannot stand or walk independently.

Yesterday, Paul completed the challenge in one hour 15 minutes and was greeted by Alycia and her family outside the Adver offices, while her parents Natasha and Christopher accompanied him on his climb.

Speaking after the climb, Paul said: “I feel uniquely wonderful as I have climbed my first hill backwards and without stopping.”

Natasha said: “I think we probably collected about £150 on the way up which is amazing.”