DETERMINED Aldwick parents Ashley and Victoria Aldridge want to give their disabled daughter the chance to dance.
The mum and dad of five-year-old Erin Aldridge have begun a £40,000 fundraising campaign after the NHS refused to fund a life-changing operation at the last minute.
The couple have started their bid for the money to pay for a selective dorsal rhizotomy procedure with Facebook and Just Giving internet pages.
These raised £1,800 in two weeks. They have also linked with the Give4Beth local charity and one of its backers for this year, Creations Hair and Beauty in Chichester. This staged its first money-spinner for them last Saturday with a charity ball at Rowland’s Castle.
The aim is to pay for the procedure privately to cut the abnormal sensory nerve fibres from Erin’s muscles to her spine. Severing them reduces the damaged messages from the muscles, and the spasticity they cause, to enable the normal messages to get through.
Mrs Aldridge said: “We have been on a massive rollercoaster. It was a big decision to make in the first place for Erin. It was quite daunting to put her forward for this operation. She went through all the procedures and then to be told ‘no’ was quite a shock because we are back at the beginning.
“We just want Erin to have this operation which will, hopefully, allow her to walk and dance like her peers.”
Erin’s life was in the balance before she was born. Mrs Aldridge, 40, of Gossamer Lane, was found to have a placenta abruption. Her uncontrolled bleeding meant she had to spend three months of her pregnancy in hospital.
She and her husband were warned at 20 weeks her life and Erin’s were at risk. A termination was suggested.But she fought on against the odds for a further ten weeks until Erin was delivered.
Everything went well for the first year but Erin’s health visitor noticed she was not crawling properly at a check up. A series of hospital appointments followed before child health specialists confirmed Erin had cerebral palsy when she was two.
Her disability is centred on her right leg and she needs walking sticks or a walking frame to get around.
Mrs Aldridge, a police officer, said: “We know we are lucky to have Erin. It could have been so much worse but we want her to walk unaided.”
F1 engineer Mr Aldridge, 42, said: “We found out that SPR had been pioneered in America and that it has a 100 per cent success rate with some level of improvement.”
The family’s GP referred Erin to a trial at University Hospitals Bristol NHS Foundation Trust.
This was called a commissioning through evaluation programme and saw Erin go through two years of tests - like brain and spine MRI scans and physio sessions - to see if she was suitable to become one of the first children to have the operation on the NHS.
The programme was overseen by surgeons, physios and other specialists and was aimed at finding out if the procedure could be offered on the health service.
“We got a letter last November to say Erin had passed all the criteria and was being accepted for surgery,” said Mr Aldridge. “She was due to have it around April.
“Then, I got a phone call two weeks ago to say the NHS had pulled all the funding and Erin would not be going forward after all. We have got to do what we believe is best. It’s frustrating because Erin can’t live a normal life.
“We don’t want her asking ten years’ down the line why we didn’t do this for her.”
A letter from Rebecca Dunn, a deputy divisional director at University Hospitals Bristol, to the couple, who also have two sons aged seven years and six months, stated it had been funded for 40 SDR cases over two years.
Only enough money was left for six more. “Unfortunately, we cannot take any further children through to surgery as part of NHS care because no more operations will be funded by NHS England until the programme has been evaluated,” said Ms Dunn.
She described the situation as a huge disappointment.
Details of the fundraising campaign are at Erin’s Dream to Dance on the Facebook and Just Giving websites.
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