A Warrington mother has launched an emotional fundraising appeal to give her five-year-old son the specialist equipment he desperately needs as he prepares for major spinal surgery.
Emma Carlton from Woolston, says her son Jayce is a “smiley, happy and determined little boy” who refuses to let his disabilities stand in the way of living life to the full.
But with Jayce facing spinal SDR surgery and potentially two years of recovery, his family are facing a race against time to make sure he has the equipment and support he needs to maintain his independence and enjoy life both before and after the operation.
Jayce was born prematurely at 36 weeks on December 19, 2020, following a difficult pregnancy which included the premature rupture of his mother’s waters at just 29 weeks.
After a gruelling 30-hour labour and a severe postpartum haemorrhage, Emma’s little boy was born weighing 6lb 1oz.
He subsequently developed jaundice and spent almost a week in hospital receiving light therapy.
As Jayce grew, however, Emma and his family began to realise that something was not quite right.
He was extremely stiff and rigid and struggled to settle, while important developmental milestones such as sitting, crawling and walking failed to happen.
He did not begin speaking simple words until he was around three-and-a-half years old.
Concerned for their son, Emma and her family arranged a private consultation with a paediatrician at Spire Hospital.
The specialist believed Jayce could have cerebral palsy and referred the family back to Alder Hey Children’s Hospital, where he underwent a series of tests and investigations.
In 2022, the family received the devastating news that scans had identified white matter changes in Jayce’s brain.
He was diagnosed with Cerebral Palsy Diplegia, with doctors believing the condition was linked to a lack of oxygen during pregnancy or birth.
Jayce has since also been diagnosed with autism.
Yet despite everything he has faced, his mum says he continues to amaze those around him.
Now aged five, Jayce attends a mainstream school with one-to-one support.
He uses a wheelchair as his main form of transport but has also worked incredibly hard to learn to use a K-walker for short distances with the support of an adult.
For Emma, the biggest challenge now is ensuring Jayce has the equipment he needs to face the next stage of his journey.
The family have been waiting for an adapted home for more than four years, but their current accommodation is not suitable for Jayce’s growing needs.
With spinal surgery approaching and a lengthy recovery ahead, Emma says the situation has become increasingly urgent.
The family are hoping to raise enough money to purchase several pieces of specialist equipment which could make a huge difference to Jayce’s everyday life.
These include:
An adapted electric wheelchair – £4,000
A junior adapted electric wheelchair with a headrest and harness would allow Jayce to travel safely in a wheelchair-accessible vehicle without his parents having to physically lift him – something which is becoming increasingly difficult as he grows.
A specialist floor-level safe bed – £2,000
An adapted floor-level bed would allow Jayce to get into and out of bed more independently while still keeping him safe during the night with padded and secure sides.
Emma says the NHS bed currently supplied requires Jayce to be lifted into it – something which is already becoming difficult and would be virtually impossible following his surgery.
An adaptive bike – £2,500
A specially adapted, hand-controlled bike with additional supports and a harness would give Jayce another way of experiencing the freedom and enjoyment of cycling.
A Huckleberry Hiker – £2,000
Perhaps most importantly for Jayce, the specialist all-terrain equipment would allow him to experience places his wheelchair simply cannot reach – from hills and mountains to off-road adventures.
The equipment can grow with him and could ultimately allow Jayce to take part in adventures alongside his family which might otherwise be beyond his reach.
Emma says that while the fundraising target may seem daunting, what matters most is giving her son the opportunity to be as independent as possible.
“Anybody who knows Jayce will know how he never lets his disability hold him back,” she says.
“He is always such a smiley, happy and determined little boy.
“He deserves this more than anything.”
The family are planning further fundraising activities and are appealing to the people of Warrington to help them reach their goal. Emma says that, as a one-person working household, purchasing all of the equipment themselves simply isn’t financially possible.
But even for those unable to donate, she has one simple request – share Jayce’s story.
Because for this Warrington family, every share could help bring them one step closer to giving their little boy the independence and freedom he deserves.
The family have set up a GoFundMe appeal, ‘Jayce’s Journey – To Raise Funds for Life-Changing Equipment’, where people can donate or share the appeal.
Donate to Jayce’s GoFundMe appeal
