Christie and Ashley are backing a fundraising campaign by Jessie May, which provides specialist nursing care to seriously ill children in their own homes.
Their son Noah has Aicardi-Goutières Syndrome (AGS), an extremely rare genetic condition which affects his development and causes inflammation and irreversible damage to the brain.
Despite being described as a happy, cheeky and energetic little boy, Noah faces an uncertain future.
His parents were devastated when doctors told them he was unlikely to live beyond the age of ten.
Christie said:
“It was one of the hardest times. There isn’t a drug or therapy that can fix it. They told us he probably won’t live past the age of ten.”
Ashley added: “As first-time parents, it was terrifying. We blamed ourselves. We didn’t know anyone else going through this.”
Following months of hospital appointments and uncertainty, the couple wanted to spend more time at home together as a family.
Noah was referred to Jessie May when he was seven months old, but Christie initially found the prospect of hospice care difficult to accept.
“I thought absolutely no way,” she said. “We had ten years. I wasn’t ready for hospice.”
However, the family soon learned that the charity provides much more than end-of-life support.
Specialist nurses now visit Noah at home, caring for him while allowing his parents to rest, work or spend time together.
Christie said:
“It genuinely is life-changing. Everything Noah needs is here. They come to us, which means we can even have a shower or nip out.”
Ashley added: “Those few hours are really precious. It’s all the little things people take for granted that mean so much to us.”
The couple say the nurses have built a strong relationship with Noah and taken time to understand his complex medical needs.
Christie said:
“They really care about Noah. Their knowledge is fantastic. They spent time learning about his condition which made us feel so comfortable.”
Ashley joked:
“They actually argue over who’s having Noah. They adore him.”
Jessie May nurse Tracie said:
“It’s not only providing the clinical care, it’s making sure Noah feels relaxed and safe at home with me, and giving his parents a little breathing room.
“The magic moments for me are the tiny ones: when he breaks into one of his beautiful smiles because he recognises me when I arrive, or when his giggles fill the room when we are hiding under his space blanket with coloured lights.
“Trusting that he is safe and happy, his parents can finally get a chance to take a moment to themselves. Those moments remind me why this work is so important.”
The support has also given Christie and Ashley opportunities to spend time together away from their caring responsibilities.
Christie said:
“Sometimes they take Noah and we both go out. It’s nice to go out and just be normal people for a bit.”
With Christmas approaching, the family are focusing on creating special memories with Noah, despite the challenges posed by his condition.
His first Christmas was particularly difficult after he experienced constant pain caused by dystonia, a movement disorder, following time in hospital.
Christie said:
“I love Christmas. When you’re pregnant, you imagine all these magical moments. But instead, we were exhausted and terrified. We had to go through a grieving process.”
The following year, the couple decided to put aside their expectations and celebrate in a way that suited Noah.
Ashley said:
“We switched to zero expectation. We just did whatever Noah was up for and still created some lovely memories.”
This Christmas, the family are looking forward to watching Noah enjoy colourful lights, shiny toys and spending time with loved ones.
Although he cannot experience Christmas in the same way as many other children his age, his parents say even the smallest moments are precious.
Christie said:
“It’s about finding what’s important for Noah and channelling that.”
She added:
“He’ll love that one shiny light toy. And sitting around the table together, even for five minutes, is really special.”
Ashley said:
“It’s moments like that which mean everything.”
Jessie May is now encouraging people across Swindon and Wiltshire to sponsor a children’s hospice nurse this Christmas as demand for its services continues to increase.
The charity supported almost 600 children and family members across the region last year, with nurses making more than 2,500 home visits.
It also provided 900 opportunities for carers to receive support, an increase of 30 per cent compared with the previous year.
More than 2,600 children across the region are estimated to be living with life-limiting conditions, while demand for children’s palliative care is projected to increase by 25 per cent by 2048.
Rising operating costs are also placing additional pressure on services.
Jessie May provides specialist nursing care for children with life-limiting and life-threatening conditions across Swindon, Wiltshire, Bristol, South Gloucestershire, North Somerset and Bath and North East Somerset.
Its services extend to parents, siblings and other family members, including bereavement and grief support.
Money raised through the Christmas campaign will help fund nurses who provide medical care, emotional support and respite to families.
For Noah’s parents, the opportunity to take a break from their caring responsibilities has made an enormous difference.
Ashley said: “Those few hours are really precious. It’s all these little things that people take for granted that’s so valuable to us.”
People wishing to donate or sponsor a nurse can visit www.jessiemay.org.uk/jessie-may-christmas-appeal-2026.
