Penwortham four-year-old Caidi Gregson with cerebral palsy diplegia desperately needs to raise £16,000 before she can even get on a waiting list for SDR surgery
A family needs to raise more than £16,000 before they can even get on a year-long waiting list for their daughter’s life enhancing treatment.
Sam Gregson and her partner Andrew Burns say they need to raise £16,000 for selective dorsal rhizotomy (SDR) surgery for four-year-old Caidi Gregson, who has cerebral palsy diplegia.
The condition affects her ability to walk and causes her discomfort, but the procedure would correct muscle spasticity by cutting the nerve rootlets in the spinal cord that are sending abnormal signals to the muscles.
Caidi, of Penwortham, is currently being assessed by the Alder Hey Children’s Hospital, as commissioned by NHS England, but her condition is too severe to be funded on the NHS.
And to add a sting in the tail, she cannot be put on the waiting list - which is more than a year - until the funds are in place.
The family also needs to find an additional £30,000 or £40,000 for physiotherapy.
Sam, 34, said: “The operation is only funded on the NHS when the condition is at a lower level. Caidi’s cerebral palsy is at a level four, which is the second highest.
“But she will still be classed as an NHS patient and will be on the same waiting list as everyone else, which is about a year. We cannot go on the list yet as we need to raise the money first.
“After the operation, Caidi will be given three weeks of intense physiotherapy but she will need more, so Tree of Hope charity will be helping us get funding for the physiotherapy, which will cost either £30,000 or £40,000.”
Caidi’s condition means she is unable to walk or stand up unaided and he gets cramp in her legs.
But the SDR operation would help give Caidi a better quality of life.
Sam, who has four other children, adds: “The cerebral palsy affects her legs and arms and she can’t walk or stand on her own.
“She gets cramp pain in her legs and we need to help her stretch her legs. She has medicine so that is under control and she does let us know when she needs it.
“She frequently wakes up at night and I have to stretch her legs out.
“The operation will stop her pain for life and she would not need any medication.
“It would mean independence for Caidi. She would be able to join in a bit more and get around by herself.
“It would mean so much to us to be able to fund the operation for her.
“She attends Lostock Hall Primary School and manages well there as she has all the equipment, including a wheelchair stander and a walking frame. She is very happy at school and her learning is okay.
“But we struggle at home because we don’t have much room in the house for all the lifting equipment, so we have to lift her ourselves from place to place or upstairs.
“We are currently waiting for South Ribble Council to find us suitable housing. We need a hoist, a special bathroom and specialist bed with access downstairs.”
Sam and Andrew have set up a JustGiving page www.treeofhope.org.uk/caidi-gregson and Andrew has organised a fun day at his work, Direct Heating Spares, in Chorley.
Sam is also leading a sponsored walk from Blackpool to Preston in July, and a fun day at a Blackpool pub in August.
A spokesman for Alder Hey said it was unable to comment on individual cases, but highlighted the criteria as set out by NHS England.
The trust can only fund youngsters aged three to nine who were at levels one to there, where they can walk and would continue to after surgery.
But it cannot fund cases at levels four to five where children are in a wheelchair and they would not be able to walk afterwards.
The surgery would be to provide comfort and ease of care.Alder Hey’s website stated: “Alder Hey will continue to provide SDR for children outside the commissioned criteria who would benefit from the surgery.
This would be provided on a self-funded basis.”