Our beautiful daughter Geneveive (Vivi) a sister for Esmeralda (Esme) was born on 25th July 2005 a healthy and happy baby.
At the age of 8 months it became apparent that she wasn’t moving around or holding herself as other babies do, and at 14 months she was referred to a paediatrician who began monitoring her progress.
It wasn’t until Vivi was 2 years old that it was suggested that her delayed motor progress was as a result of an underlying neurological disorder. This was a frightening and confusing prospect, and at 2 1/2 with no improvement and more concern Vivi had an MRI scan and lumber puncture under general aesthetic to determine the exact cause.
The scan was conclusive and Vivi was diagnosed with spastic quadriplegic cerebral palsy. We were told she would never walk…
Vivi’s condition affects all four of her limbs but has a particularly profound effect on her lower body, legs and feet. Since her diagnosis in 2008 we have sought the best possible outcome for her future both personal and educational.
Amazing and against all odds, Vivi was taught to stand and take her first steps by The Pace Centre in Aylesbury using conductive education where she still attends one day a week. She has walked with
the help of walking sticks, splints and a K walker. She now has a wheelchair. Vivi also attends a local mainstream school – Oakfield in Windsor.
During 2011 and 2012 Vivi’s condition resulted in a worsening leg, foot position and very inflamed feet, leaving her feet consistently swollen and in pain. To try and relieve this she has received 5 botox injections under general anaesthetic on two occasions and was ‘caste’ in plaster afterwards– sadly this had no effect and no relief from pain.
Vivi is very bright and determined little girl that never gives up and refuses to say ‘disabled’ – only ‘less abled’.
By January 2012 Vivi had deteriorated significantly with a worsening, twisted and introverted foot position, causing ‘Bisitis’ (the base of her little toes poking through the side of her feet and then filling with liquid resembling small golf balls)! Her hips also started to deform and her leg twist causing great pain when she tried to walk, she was confined to her wheelchair for a while to relieve the pain and swelling. It was during this time we applied to Frenchay hospital’s Mr Aquilina, one of the top neuro-surgeons in the Country who had recently brought SDR to Frenchay as performed by St Louis Children’s hospital.
SDR was the only option that could reduce the spasticity and improve motor activity – a complex and arduous procedure needing 3 years post op to re educate the body to walk and build up strength from muscles that had been
never used before due to the spasticity, the surgery alone costs £25,000 to perform.
Vivi was assessed and accepted by Frenchay fitting their very strong critera exactly!
The hospital confirmed her elidgibility and applied for the funding for the procedure to our local Berkshire PCT but they declined the request saying there was no funding available for her to have this operation.
We the set about the task of raising the money to have this life changing opertunity and set up this website to promote awareness for the fundraising so we can offer her a better quality of life and a chance to do what all 7 year olds should be able to do!
An April 2013 operation was planned but then to our surprise a cancellation was offered and as we just had enough funds available we took the cancellation on October 30th 2012.
Vivi became child number 36 to have this operation at Frenchay.
The operation was performed successfully cutting 50% of the nerves on her right side and more on her left, these were the nerves responsible for locking Vivi’s muscles, now the hard work must begin of building up the dormant muscles and re-educating a corrected walking pattern. This requires 3 years of intensive physio, orthotics, gait analysis, constant monitoring and follow up.
This website was been set up to help raise enough money for Vivi to have the operation, post operative equipment, physio and rehab and 20 years of follow up to enable her to achieve her dream of pain free walking
We would be so grateful for any help you can offer Vivi in her venture to walk not ride in a wheelchair!