Northamptonshire mum helps launch trial for life-changing operation for cerebral palsy sufferers

Holly Davies

Holly Davies

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A life-changing operation for cerebral palsy sufferers is set to be trialled in the UK thanks to a campaign by a Northamptonshire mother.

In 2010, four-year-old Holly Davies was flown to the USA for a special treatment known as selective dorsal rhizotomy, which has virtually helped rid her of the mobility-limiting condition.

Her mother Jo, 39, who works as an administrator at Northampton College, and father Jerome, 37, a photographer, raised more than £40,000 to fly their youngest daughter across the Atlantic for the operation.

But this week the NHS announced it will begin to trial 120 of the operations a year at five hospitals across the UK, thanks to four years of intense lobbying by the Davies family, and Daventry MP Chris Heaton-Harris.

Mrs Davies, from Daventry, said: “It will make such a major difference to hundreds of children and families to lead a more comfortable life.

“There is nothing worse than seeing your child in pain.”

The NHS had blocked the operation, which loosens tangles of nerves at the base of the spine that have been damaged in a child who was starved of oxygen at birth, saying its worth had not been proved.

But on returning from America Mrs Davies said Holly’s condition improved within weeks.

“Before the operation Holly could not walk flat-footed,” Mrs Davies said. “She could not hop, skip or run. She could not ride a bike.

“Now she do all that – there’s no difference between her and any other eight-year-old now. She would have had to use wheelchairs and tripods by her teens.”

Mrs Davies’s campaign saw her team up with hundreds of other parents whose children had received the pioneering treatment. Together with MP Mr Heaton-Harris, she met top NHS bosses and chairman of the National Institute for Clinical Excellence (NICE), David Haslam, among others, who were convinced to run a three year trial of the surgery.

The NHS is set to produce a report after the trial and a decision will be made as to whether to adopt the treatment, first developed more than a decade ago, into practise. It is currently only available through private treatment in the UK or Unites States, which can cost up to £50,000 in some instances.

“I have never met anyone that has been adversely affected by the treatment,” said Mrs Davies, who first found out about it watching GMTV. “Our kids should be entitled to anything that makes their life bearable.”