James' Story | Julia's House

“When James was born, the labour and the birth were perfectly healthy and normal. The only newborn test he failed on was the hearing test on one side,” says dad Nigel.

It wasn’t until Christmas time when he was around three months old that doctors discovered James was completely deaf.

“It was like a punch in the stomach,” says Nigel. “We weren’t expecting it.”

Sadly, further investigations would deliver more devastating blows to the family. Over a phone call in the rain, Nigel was told that James had a rare and incurable form of cerebral palsy called polymicrogyria.

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“It means ‘too many folds on the brain. His central brain is normal, but the message takes so long to get where it’s meant to be, it doesn’t always get there," explains Nigel.

The condition had been caused by a virus called Cytomegalovirus, or CMV for short, during mum Ciara’s pregnancy. The virus is common and can be spread easily in young children, who often show no symptoms, but can cause cerebral palsy when passed on by pregnant women to their unborn babies.

Only around 80 children in the UK are diagnosed with James' condition each year and it affects each of them differently.

“Over time we’ve learned more about what James can and can’t do,” says Nigel. “It began with, ‘If he can’t sit unaided by two, he’ll probably never walk,’ and it went from there.

“Each time you discover something, you get the punch in the stomach and you grieve a little bit. And then you move on because what else can you do really.”

Today, James needs constant care - day and night - for his complex condition. The 15-year-old can only communicate by eye gaze and sounds. He also has epilepsy and has previously suffered from seizures, which is kept under control with medication.

The teenager can’t walk and has scoliosis of the spine, which has worsened to a 30-degree bend and causes him agonising pain. Unfortunately, because James has picked up a common but incurable bacterial infection called pseudomonas – likely from a swimming pool – which he needs to have daily antibiotics for, another operation could cost him his life. So rather than risk spinal surgery, James now has a specially adapted wheelchair to make him more comfortable.

James also can't eat orally or through his stomach due to severe vomiting episodes, and he has recently been fitted with a jejunal feeding tube that goes directly into his bowel. If this doesn't work for James, dad says there's no other way they will be able to feed him.

At first, Nigel and Ciara felt as though James' condition was manageable. But over time, his health has taken a heartbreaking downward spiral.

"I used to push James in his wheelchair, and we’d run and laugh that we were paralympic bobsleigh training,” says Nigel. “But now he’s starting to fail and things have changed. It's stressful and we wish it wasn't this way for James, but we have to be resilient – what can we do otherwise.”

“When James is well, he’s great – he's the best. He’s a really engaging, happy, cheerful boy. And women love him! He has a big smile and a really cheeky sense of humour. His laugh is infectious.”

He says, “However difficult James was when he was younger, if someone had given me a magic wand and I could have changed him, I wouldn’t have done it. Because he has his own personality and his own ways, and his condition is part of who he is. But over the last couple of years, he’s gradually going downhill in lots of different ways, and we’ve had to have those end-of-life conversations. If I could wave a magic wand and change him to a healthy child now, I would."

As the pressure on the family became more intense - especially for dad Nigel, who is James' main carer – they reached out to Julia’s House for help.

“We never saw ourselves in need of support when James was younger. But as he’s gotten older, things have become more difficult and it’s exhausting,” says Nigel. “We decided we needed more help, more headspace.

"Everything is a battle when you're caring for a child with complex needs, like James, but with Julia's House it isn’t - they make it easy for us,” says Nigel.

“The care that Julia’s House provides is above and beyond a fun afternoon for James; they help us all, however and whenever we need their support.”

He says, “Everyone at Julia’s House is brilliant and they’ve really got to know James. It’s great that our Julia’s House nurses can come to our home. James has also started to go into hospice sessions, and he absolutely loves all the sensory lights and attention. He gets so much out of being in that special setting that isn’t home or school.”

Nigel says, “When James goes to the Julia’s House hospice, I read a newspaper. It feels like I should be doing something useful – and often I do – but just to have that bit of headspace to read a newspaper is invaluable for me. I love newspapers, I've got piles of them at home and never get the time to read them.”

Particularly, Nigel and Ciara are grateful to Julia's House for the time they're given to spend with their 17-year-old daughter, Seren. Recently they were both able to go along to watch her county rugby game along with their older daughter, Nia, because James was safely being looked after by Julia's House nurses at their home.

"That would never have happened without Julia's House," says dad Nigel. "And it's so important to have that time to dedicate to Seren.

“Despite everything that James has to go through, it’s the girls and particularly Seren who I feel most sorry for.

“There are things we haven’t been able to do because of James, and Seren has missed out. She’s been brilliant with him throughout her life, and you only have to see the way he looks at her to know how much he adores her. But it’s always been about James all her life. And that’s tough.”

A recent overnight session at the Julia’s House hospice in Devizes also gave Nigel and Ciara their first night out alone together in six years.

“Ciara started to call me the 13 per cent because she read that 87 per cent of parents with a child with a learning disability get divorced. And I can see why – we don’t ever get ‘us’ time; it just doesn’t happen,” says Nigel.

“We were so grateful to Julia’s House for offering to look after James at the hospice overnight, so we could have one night on our own together. And we could relax because we knew James was in safe hands, having the most amazing care.

“James had been in hospital that week vomiting, and we thought that we’d have to cancel but the Julia’s House team said if he was well enough to come out of hospital, they would still take him. I hadn’t washed or shaved because I’d been in hospital, so I looked a state by the time we got to the restaurant, but I’m so glad we decided to go ahead with it. We only went for a meal and a night in a local pub, but it was so important to have that time for us.

“Julia’s House gave me the chance to be a husband, and not a carer for the night.”

The family are close and love to make festive plans together at Christmas time when they can, but it gets harder each year.

"James loves all the lights and the trees at Christmas. There was a time when we’d book all four Fridays up to Christmas at Westonbirt Arboretum near us to see their light display, and if James was well enough we’d go. I still get dressed up as Santa every Christmas morning because James loves it so much.

"But something always seems to go wrong for us at Christmas, I can’t explain it. Christmas is lovely in Castle Combe – people spontaneously gather for carols in the marketplace and go for midnight mass on Christmas Eve. And we never get to enjoy it.

“James has had seizures and vomiting episodes on Christmas Eve, we’ve spent Boxing Day in hospital, we’ve spent Christmas Day walking him around the village because he just won’t stop screaming.

“Two winters ago, James developed severe respiratory issues. We were honestly looking forward to having Christmas Day in hospital with James because just days before we thought we were going to lose him.

“Last year, he was okay for Christmas, but on New Year’s Eve he started vomiting and didn’t stop until February.

“Everyone was celebrating with parties and fireworks, and James was projectile vomiting and being rushed into hospital.

“December is the beginning of the winter virus season and the most dangerous time for James. Something as simple as a cold could be catastrophic,” says Nigel.

“People always say, ‘It's respiratory problems that will get James in the end.’ And because of the past few winters, we do worry – what could go wrong this year.”

Nigel added, "James is in a good place at the moment, so we’re hoping for a good Christmas at home all together this year. And if James wants to spend the day in his room, we’ll bring Christmas to him there.”

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