Sunday's Chester Half Marathon would be considered a big enough challenge for many, but one Chester couple are combining it with a gruelling triathlon across the region in 24 hours for a special cause.
On Sunday, May 18, as runners prepare to begin the city’s annual half marathon, Paul Worsfold will have already completed a 26-mile kayak down the River Dee in virtual darkness before starting the 13-mile run.
His wife Aimee and some of his friends will join him for the half marathon, and after that, they’ll jump on their bikes to cycle a further 26 miles to the Wirral, on to a ferry across the Mersey where they will continue their cycle to the charity Zoe’s Place.
The 65-mile challenge will be incredibly hard work, but Aimee and Paul, of Curzon Park, will have one person in mind throughout the trek – their 18-month-old son Stanley.
The couple’s lives were turned upside down after Stanley was diagnosed with viral meningoencephalitis shortly after his birth at the Countess of Chester Hospital in November 2012.
They had suspected something wasn’t quite right since Stanley’s breathing patterns didn’t seem normal, he was slow to take food and was becoming increasingly grizzly.
Aimee said: “As a mum, you just know when something is wrong with your child, I just couldn’t put my finger on it.”
When Stanley started having seizures and was unable to breathe properly or even maintain his own temperature, he was transferred to Liverpool’s Alder Hey Hospital to undergo tests and MRI scans.
It was there doctors discovered signs of brain damage and devastated Aimee and Paul, who also have a four-year-old son Archie, were told their baby boy had a condition called viral meningoencephalitis, an inflammation of the lining of the brain.
“Our world was turned upside down,” remembers Aimee. “It was at this point we were told he was unlikely to survive and that if he did his life would be ‘severely compromised’.
“The specialists identified Stanley had caught a relatively common virus in the first few weeks of his life, a virus which most of us will have had at some point, but no one knows why it spread to his brain and affected Stanley in such a devastating way.”
After three failed attempts to remove him from his life support machine, Stanley miraculously managed to defy the odds and breathe without the ventilator.
“This was a very emotional time for us as parents as it meant that for the first time in almost four weeks we could hold and cuddle our little boy,” recalls Aimee.
Stanley spent almost two further months on the high dependency unit at Alder Hey, during which time he fought the fight of his life.
Remarkably, over time he gradually managed to reduce his dependency on machines for breathing, eventually only requiring oxygen support.
A couple of weeks after extensive surgery, he was transferred back to the children's ward at the Countess of Chester Hospital.
Here he spent a further few months receiving treatment for various chest infections and collapsed lungs, while Aimee and Paul prepared to eventually take Stanley home.
It’s now been more than a year since he returned home, but it’s not been plain sailing.
There have been numerous hospital admissions and Stanley also has an acquired brain injury which means complex care and medical needs, including global developmental delay and chronic inflammatory lung disease which means he has to be tube-fed.
But he continues to surprise everyone each day and the ‘little soldier’, as his parents call him, is doing well.
Throughout such a devastating time, Aimee and Paul say they couldn’t have coped without the support of friends and family, and especially Zoe’s Place, a lifeline to parents just like them, providing vital care and respite that allowed them to spend much-needed time with their four-year-old son Archie.
There, registered nurses, play leaders and physiotherapists provide bespoke one-to-one care for babies suffering life limiting or life threatening conditions 24/7.
“When we got Stanley home we had little support in looking after him,” says Aimee. “His care and management needs are quite high and it was a difficult time, so we were referred to Zoe’s Place who agreed to look after Stanley for respite every fortnight to give us time to recuperate and spend time with Archie.
“His life had been turned upside down because of Stanley’s illness – we moved to Liverpool and lived in the Ronald McDonald house at Alder Hey. He was away from his nursery friends and it was a total change for him.
“Zoe’s Place is an amazing home- from-home and we know they’ll look after Stanley well.”
Aimee added: “We realise how many charities there are out there that families like us rely on but until you are in this situation, you don’t realise how vital they are.
“We need to raise as much as we can so babies who suffer with life limiting or life threatening conditions are able to gain the specialist care and support they deserve and to live their lives to the full. It costs over £3,000 a day to keep Zoe’s Place running so we want to raise at least £10,000, which sounds like a lot but is actually about three days’ funding.
“In the future we hope to do more fundraising for other charities. Last year we raised £1,000 for Ronald McDonald House because without them we wouldn’t have been able to remain a family unit at such a difficult time.”
You can donate to Aimee and Paul’s cause by visiting www.justgiving.com/Tri4stanley .
