AN operation to help children with cerebral palsy walk will be trialled on the NHS – but one mum says she will still fundraise for her daughter to go to America as it could be years before the treatment is offered routinely, if at all.
Cross Keys mum Beth Robinson, 30, is almost halfway to reaching her fundraising goal of £65,000, with the milestone of £30,000 just £1,500 away.
She and husband Dan want to take their daughter Olivia, 5, to Missouri where the SDR (selective dorsal rhizotomy) operation to reduce muscle spasticity has been given to many youngsters including Cross Keys tot Maisie Cooper.
But Mrs Robinson said she hoped recent news about the operation being given a limited trial in the UK wouldn’t slow down fundraising.
“We are very aware of the SDR trial,” she said. “I think it’s giving some people the wrong idea - it doesn’t mean they are funding every case. Over the next year they are funding 120 cases in a trial in England but only around six we think in Wales.
“We did see the doctor who is putting the cases forward for this in Wales a month or two ago, so she is aware of Olivia but obviously there are a lot of children probably more able than Olivia who will be put forward instead.
“At the moment they won’t fund it because there’s not enough evidence to show the benefits of the operation.
“Olivia is five now and we don’t know how long it will be until decisions on funding are made.
“Within the next three or four years, she could be up and walking already so it’s not something we can hold off on.”
“The criteria for the operation is that children can walk independently, without any aid. We think Olivia will always need some sticks or some kind of aid – we don’t think she could get up and walk without anything at all. We think that restricts her although we are still keen to apply.”
Mrs Robinson said she was about to take a year-long career break to focus on raising money for Olivia.
A Welsh Government spokesman said: "We fully appreciate the desire of families who have children with cerebral palsy to pursue treatment they feel could improve their child's life.
"In common with the rest of the UK, SDR is not routinely commissioned by NHS Wales because there is a lack of clinical evidence at this time to support the treatment. However, Wales will be taking part in NHS England’s 'commissioning through evaluation' process to fully assess SDR’s effectiveness to inform its future use.
“This means funding will be made available for a small number of children in Wales to have the treatment.”
Upcoming events raising money for Olivia include a fun week at Ystrad Mynach Tesco over the last weekend of August, a children's disco on August 28 at Newbridge Rugby club and a zip wire challenge at Chepstow diving centre.
To donate, visit www.justgiving.com/footsteps-for-liv.