Christmas in Freya’s home is full of sparkle, shared between mum Kelly, brother Freddie and dad Dave – but it also looks a little different to most families.
Freya lives with Pyruvate Dehydrogenase Deficiency, a rare metabolic condition that affects how her cells produce energy. When she was diagnosed, Kelly and Dave were told their daughter wouldn’t survive childhood.
“I remember asking, ‘Is she going to die?’ And they said, yes. No compassion. No comfort.” Kelly explained.
But Kelly’s response was immediate and fierce: “I’m going to prove them wrong.” And she has. Freya is now 14 years old.
Freya’s condition affects every part of her life. Her brain is significantly underdeveloped, she has a severe visual impairment, and because her body burns fat instead of carbohydrates, she relies on a strict ketogenic diet – every gram of food is carefully weighed and measured. She is non‑verbal, yet communicates beautifully in her own way. 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.
A Christmas that works for Freya…
Freya loves twinkly lights, shiny decorations and anything that glows. But the world around her can quickly become overwhelming. As Kelly explained, “Freya just cannot tolerate lots and lots of people or lots of noise, so that means we tend to avoid busy Christmas events like Christmas shopping…unless it’s quiet.”
So Christmas becomes quieter, gentler, and carefully planned. Busy shops, loud music, wrapping paper, all the things many families take for granted, can be too much for her. Winter germs are another worry, and Kelly and Dave work hard to keep her safe. “Everyone’s been really ill and we’ve been trying to keep Freya away from it,” Kelly said.
Even with the adaptations they make, Christmas still feels wonderfully special. The family fill their home with soft lights and familiar routines, creating a calm, cosy space where Freya can enjoy the magic in her own way. These moments together mean everything to them.
As Kelly said, “You just don’t know how many Christmases you have left with her.”
The moments that Jessie May helps make possible…
Some of the most meaningful moments are the simple ones – the glow of fairy lights, the excitement of advent calendars, and Freddie choosing a special gift for his sister. And Jessie May plays a quiet but powerful role in making those moments possible.
Last year, a Jessie May nurse stayed with Freya so Kelly could take Freddie Christmas shopping – something they rarely get to do together. They caught the bus into town, wandered through the Christmas markets, soaked up the twinkly lights, and even stopped for a hot chocolate.
Kelly told us:
“All the shops were busy and rammed and it was all like the Christmas markets, loads of chatter, but we could do everything he wanted to do because we didn’t have to worry about Freya.”
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.”
When they got home, he proudly showed Nurse Bryony what he’d bought:
“She made such a big deal about it – ‘Oh my God, I love that!’ Even if she didn’t, she made him feel amazing. He was so chuffed… ‘Look at me, even the nurse liked it.’” It’s moments like these that show how Jessie May nurses support the whole family, not just the child they’re caring for.
Meanwhile, everything at home was taken care of:
“They’d washed Freya, got her ready for bed… Dave could come home from work and spend precious time with her nicely, reading to her on the sofa.”
It meant Freddie had his moment of Christmas magic. It meant Dave had calm, gentle time with his daughter. And it meant Kelly could enjoy being a mum, not just a carer, for both of her children.
These are the moments Jessie May helps create. The moments that make Christmas feel possible. The moments families like Freya’s hold onto, year after year.
Read more about Freya here – The Story that inspired ‘The Freya Foundation’ – Jessie May
