A Windermere mum has started a campaign to raise £20,000 for life-changing surgery for her four and a half-year-old son.
Cole Murray was born at just over 27 weeks, weighing only 2lb 11oz and suffered a bleed on his brain, was ventilated, fought infections and had endless needles and procedures. He still required oxygen two months after his birth.
It soon became clear to his family that he wasn’t meeting the same milestones as other babies and at nine months he was diagnosed with Spastic Quadriplegic Cerebral Palsy.
The condition has a profound impact on Cole’s day to day life.
“If we go to a park with his older brother or something like that, he has to watch,” said mum Hayley Phillips, 41. “If we take Cole to the park he doesn’t know why he can’t be lifted onto our shoulders or why he can’t go to the top of the climbing frame.
“He is starting to get to the age where he is noticing that he is a bit different, but we always tell him that everyone is different. He is so happy and so determined.”
Getting Cole the operation he needs would mean “everything” to his family.
“We would know we were giving him the best chance to be as independent as possible. If we didn’t do it we would sit here when he is older and wonder what would have happened.
“It is the best we can offer him right now. I don’t think there is a procedure better than this for his cerebral palsy.”
His family is raising money for spinal surgery that will remove the spasticity in his legs, reducing his pain and need for medication, making him more comfortable and the need for future surgery.
Huge difference
It will help his ability to swallow, will improve his speech, will help strengthen his upper body and will enable him to be more independent as he gets older.
Cole is a powerchair user and is unable to walk but the surgery would allow him to stand and transfer, meaning he can move himself from one chair to another and allow him to use the toilet unaided.
“It will give him the best chance to have good upper body strength and give him the best possible outcomes,” said mum Hayley Phillips, 41.
“It will improve his independence when he gets older. It won’t allow him to walk, but it will take a lot of the pain away.
“We want to give him the best chance to look after himself when he gets older.”
Hip dislocation
Another symptom of Cole’s condition is that his muscles tighten and recently this caused him to dislocate his hip.
He must now have reconstructive surgery to repair it. The much-needed surgery would stop similar things from happening in the future.
It was during the first lockdown when the Selective Dorsal Rhizotomy (SDR) procedure that he needs was made available on the NHS.
Although Cole would benefit greatly from SDR, he doesn’t meet the criteria to have it funded by the NHS.
“It is still shocking but it is better than it was,” said Hayley.
A number of fundraising events are planned in the coming months, including a bingo night in December and a raffle.
The £20,000 would pay for the treatment and a year of aftercare. The family will fund the remainder of the aftercare Cole needs.
Read the latest update here: Mum celebrates life-changing moment for son after target met