Couple launch campaign to pay for life-changing operation for daughter
Last updated at 10:30, Sunday, 13 July 2014
A desperate couple have launched a £25,000 fundraising campaign to pay for a life-changing operation for their little girl.
Nicola and Lee Pears of Workington were given the heartbreaking news that their daughter, Isabelle, suffered from spastic diplegia, a form of cerebral palsy, nearly three years ago.
The condition results in Isabelle, now five, having an extreme tightness in her legs, which leaves her walking on her toes and with a swing in her step.
The youngster, who wears splints throughout the day and leg gaits at night, has been through painful rounds of botox, extreme physiotherapy and has her legs in plaster casts for weeks at a time to try to help the problem.
But these have had little effect on Isabelle and her family say her condition is now at its worst and fear she could end up in a wheelchair.
All her family – mum, dad and older brothers Cain and Ryan – want her to have a better quality of life and they believe they have found the solution – but it will cost them £25,000.
Isabelle can have a potentially life-changing operation at Leeds General Hospital, which would cut the spinal nerves causing the spasticity to relax the tightness, but it is not routinely funded by the NHS.
An evaluation programme is currently underway to determine whether the procedure could be routinely funded in the future, but may take up to two years to complete.
Isabelle’s mum says they can’t wait that long.
“The spasticity is at its worse,” said an emotional Nicola, 34. “As she gets older she may need a wheelchair and this is something that would break her heart, to have the independence that she has now, stripped away from her.
“She is so amazingly great at everything she does and has a positive ‘I can do it’ attitude.”
If Isabelle goes anywhere that she would have to walk for longer than five minutes, she has to take a pram along and she is constantly covered in bruises after falling over several times a day.
“She complains because she wants pretty shoes and to be able to put her own socks on, as well as wiggling her toes and keeping up with other children,” said Nicola, from Newlands Lane. “She would love to put on a pair of wellies and jump in puddles – something she has never been able to do because her feet won’t stay in them without splints and simply won’t fit with them on.”
Isabelle is pencilled in for the £25,000 operation later on this year and her family has this week launched Isabelle’s Dream fundraising campaign.
“This operation should be routinely funded – we’re not living in a third world country and if children can benefit from it to have a chance of life, it should be available,” said Nicola.
“I feel frustrated we have to fund it ourselves, as so many other funding options are given to those less in need.”
The selective dorsal rhizotomy (SDR) operation is only offered in a select number of English hospitals following its success in America. Before February, people were able to apply to their local primary care trust for a funding grant, although they were not always successful. But five months ago the potential funding stopped when NHS England began an evaluation programme to determine whether the procedure could be routinely funded.
An NHS England spokeswoman said: “We understand how difficult this is and sympathise with the families that feel their children may benefit from this treatment. Up until now evidence does not demonstrate sufficient effectiveness for its routine use. Since April 2013, therefore, it has not been routinely funded by the NHS as a treatment for cerebral palsy.
“The treatment has, however, now been identified as a potential option for the future and we are running an evaluation programme to test its benefits which means this treatment may be offered to patients taking part in the trial. This will tell us whether SDR should be made routinely available in the future.”
Douglas Battie, from Cumbria Cerebral Palsy, said he was only aware of one other family in the county looking into the operation, but in the end they decided against it.
“If a procedure is proven to be successful, we would like this to be funded by the NHS and we are hopeful that’s the decision that will be made. It is a large sum of money for a family to fund, but if you can get the local community on board that does make it easier.”
To donate, visit www.treeofhope.org.uk/isabelles-dream or call Nicola on 07851494625
First published at 10:29, Sunday, 13 July 2014
Published by http://www.newsandstar.co.uk
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