Children’s Hospice urges Bristol to sponsor a nurse this Christmas as demand for care rises

Children’s hospice-at-home charity Jessie May is asking the community to sponsor a nurse this Christmas, helping more families like Freya’s, 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 Bristol, North Somerset, South Gloucestershire, Bath & North East Somerset and Wiltshire – 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 Freya’s can continue to receive the specialist nursing care and emotional support they need, both now and in the future.

Freya lives with Pyruvate Dehydrogenase Deficiency (PDH), a metabolic condition that affects how her cells produce energy. Her parents were told she would not survive childhood, yet today, she is 14.

Her condition affects every part of her life. Her brain is significantly underdeveloped, she has a severe visual impairment, she relies on a strict ketogenic diet, and is non-verbal, yet communicates beautifully in her own way. Every day requires constant supervision, careful planning and specialist care from those around her. And despite everything, she is full of life. Her family affectionately call her “the queen,” because she has a way of getting adults to do exactly what she wants without saying a word.

Caring for Freya is a full-time role for her parents, who are responsible for meeting her complex needs around the clock. Simple things many families take for granted, from running errands to spending one-to-one time with siblings or preparing for special occasions, can be difficult to manage without support.

Every moment together feels especially precious for the family. As Kelly explains, “We don’t know how many Christmases we’ll have with her, so every moment counts.”

 

 

That’s why Jessie May nurses have become such an important part of their lives. Their specialist support at home creates opportunities for Kelly to take a break from caring, for the family to spend quality time together and to enjoy moments that might otherwise not be possible, especially at Christmas.

Freya loves twinkly lights, shiny decorations and anything that glows. But busy shops, loud music and rustling wrapping paper can quickly become overwhelming. Winter germs are another worry, and the family often shop early or stay home to keep her safe.

Last year, a Jessie May nurse stayed with Freya so Kelly could take her brother Freddie Christmas shopping; something they rarely get to do together. They wandered through the Christmas markets, soaked up the Christmas lights and even stopped for a hot chocolate.

“All the shops were busy and rammed with loads of chatter, but we could do everything he wanted to do because we didn’t have to worry about Freya,” Kelly says. “It was really special.”

One of Freddie’s favourite moments was choosing a present for his sister.

“We went into Lush and he spent time picking the bath bomb he wanted to give Frey. He used his own money, chose the Snow Angel one, put it in a little bag… he felt so grown up.”

Meanwhile, everything at home was taken care of:

“They’d washed Freya and got her ready for bed, which meant dad Dave could come home from work and spend proper time with her, reading to her on the sofa.”

It’s moments like these that really matter.

Moments like these are only possible because Jessie May nurses give families the space to enjoy them.

Kelly says Jessie May’s superpower is simple: “They give the child a better quality of life while they are still here. It is really important.”

This Christmas, sponsoring a Jessie May nurse will help the charity continue providing vital care for families like Freya’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.

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