Campaign to fund life-changing op for Walsall girl
- 9 April 2014
- From the section Birmingham & Black Country
The parents of a five-year-old girl with cerebral palsy say they have been amazed by the generosity of the local community in helping to fund a life-changing operation for her.
Amber Porterfield, from Pelsall, was first diagnosed with spastic diplegia cerebral palsy at 18 months old.
She needs a frame to walk and often relies on a wheelchair.
Parents Mark and Susannah hope to raise £60,000 for a procedure in the USA which could allow her to walk.
"At first it's really, really daunting," Mr Porterfield said.
"It's expensive, but what price do you put on someone being able to walk?
"The general community of Pelsall has been absolutely fantastic. Their generosity has been heart-breaking."
The operation, called Selective Dorsal Rhizotomy (SDR), involves accessing nerves in the spinal chord to reduce tightness in the muscles in lower limbs.
The £60,000 is expected to cover the operation as well as a month's stay in the USA and follow-up therapy.
'Best for Amber'
The family underwent an initial assessment in the UK in October before discovering funding had been withdrawn by the NHS earlier in the year, which Ms Porterfield described as "incredibly frustrating".
NHS England said SDR was not routinely funded from April 2013 but, hospital trusts were currently being considered as specialised centres for the procedure.
While the procedure is available privately in the UK, Amber's parents said they were hoping to raise enough money to travel to St Louis, where the technique was developed.
"We've got one shot at this operation and we've got to do what's best for Amber in the long run," Ms Porterfield said.
The fundraising campaign has just been launched, with events due to start in the coming weeks.
Despite that, Ms Porterfield said £2,000 had already been donated by people, mainly from Pelsall.