Swindon family urges people to sponsor a children's hospice nurse this Christmas

Sponsorship will help more families like those of Swindon child Noah to continue to receive specialist care, trusted nursing support and the chance to enjoy everyday family moments that many take for granted.
Last year, Jessie May nurses carried out more than 2,500 visits to families across the region – in Swindon, Wiltshire, Bristol, North Somerset, South Gloucestershire and Bath & North East Somerset - supporting almost 600 children and family members. 
They also provided 900 opportunities for carers to receive support; a 30% increase on the previous year, reflecting growing demand for specialist hospice-at-home care.
More than 2,600 children across the region are estimated to be living with life-limiting conditions, and demand for children's palliative care is projected to increase by 25% by 2048. 
At the same time, rising costs are placing increasing pressure on children's hospice care services, making support from local communities more important than ever.
In response, Jessie May is urging the public to sponsor a nurse this Christmas, helping to ensure that families like Noah's can continue to receive the specialist nursing care and emotional support they need, both now and in the future.
Two-year-old Noah is cheeky, smiley and full of energy. He has a bright presence and a grin that warms the room. Behind that happy personality, Noah lives with Achardi-Goutières Syndrome (AGS), an extremely rare genetic condition that affects every part of his development.
AGS is a condition that causes inflammation and irreversible damage to the brain.
“It was one of the hardest times,” mum Christie said. “There isn’t a drug or therapy that can fix it. They told us he probably won’t live past the age of 10.”
Dad Ashley said: “As first-time parents, it was terrifying. We blamed ourselves. We didn’t know anyone else going through this.”
After months of hospital visits and uncertainty, Christie and Ashley were longing for what many families take for granted: time together at home and the chance to enjoy everyday moments with Noah. 
With the support of Jessie May, they finally began to experience more of those precious moments as a family.
Noah was referred to Jessie May at seven months old. At first, the word “hospice” felt frightening.
“I thought, 'absolutely no way',” Christie said. “We had 10 years. I wasn’t ready for hospice.”
They then discovered what Jessie May really offers.
Jessie May nurses visit Noah at home, giving his parents time to rest, work or simply be themselves rather than carers. 
“It is genuinely is life-changing,” Christie said. “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 nurses have become part of Noah’s world. “They really care about Noah,” Christie said. “Their knowledge is fantastic. They spent time learning about his condition which made us feel so comfortable.”
Ashley added: “They actually argue over who’s having Noah. They adore him.”
Nurse Tracie said: “Caring for Noah is a privilege. 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 Jessie May nurses also help Noah’s parents reconnect as a couple. “Sometimes they take Noah and we both go out,” Christie said. “It’s nice to go out and just be normal people for a bit.”
These moments continue to be made throughout the Christmas period.
Noah's first Christmas was incredibly hard. Noah cried constantly, was in pain from dystonia and had already spent time in hospital just before.
“I love Christmas,” Christie said. “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.”
Last Christmas, everything changed. “We switched to zero expectation,” Ashley explained. “We just did whatever Noah was up for and still created some lovely memories.”
This year, they’ll make Christmas special in Noah’s own way. He won’t run downstairs or open presents. He won’t understand Santa or stockings. But he will love the Christmas tree lights, the shiny toys and the warmth of being surrounded by people who love him.
“It’s about finding what’s important for Noah and channelling that,” Christie said. “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.”
To enjoy these moments with Noah at Christmas, Jessie May's support has been vital. Even just being able to rest can allow them to be more present for Noah in moments like these, and to also prepare for these moments so they can create memories together in whatever way works for them all.
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.”
This Christmas, sponsoring a Jessie May nurse will help the charity continue providing vital care for families like Noah's, giving parents a chance to rest, siblings valuable time to simply be children, and children with life-limiting conditions the opportunity to enjoy the moments that matter most.
Every donation will help ensure families can continue to receive specialist nursing care, emotional support and a well-needed break at home when they need it most.
To sponsor a Jessie May nurse, people can visit https://jessiemay.org.uk/jessie-may-christmas-appeal-2026/
 

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