Freya is 14 years old and lives in Bristol with her mum Kelly, dad Dave and younger brother Freddie who is 10.
Freya’s mum Kelly had a normal pregnancy. Freya was her first child and born by caesarean section weighing 6lb 1oz. Kelly and Dave left hospital ready to begin life as a family of 3 with their new baby girl.
In the early days of Freya’s life, Kelly attended baby groups with other new mums and their babies. She began to notice small differences in Freya’s development and later reflects,
I could see things that didn’t feel quite right, but as a first-time mum I kept doubting myself.
After raising her concerns with a health professional, she was reassured there was nothing to worry about. As a first- time mum Kelly says she had to trust health professionals as they were the ones with the knowledge.
When Freya reached 6 months old Kelly still felt something was not right and she visited their GP who believed their concerns. They were sent to Bristol Eye Hospital where Freya had an MRI scan. Following this they were invited to see a Neurologist who carried out more tests including a skin and muscle biopsy.
The results from all of these tests indicated that Freya had a condition that was life-limiting and that she had more complex needs than anyone had anticipated. “We went in hoping for simple answers, but the reality was very different,” Kelly added.
The family had expected to be told that Freya had a sight impairment that could be ‘fixed’ but instead were given a difficult diagnosis. Freya was diagnosed with Pyruvate Dehydrogenase Deficiency, which affects her learning and requires her to follow a specially prescribed ketogenic diet and to be orally fed.
Kelly explains,
That moment reshaped our future in ways we couldn’t have imagined.
After further tests, medication, special diets and various trips in and out of the children’s hospital the family were referred to Charlton Farm in April 2013 for support.
When someone first mentioned the word hospice Kelly found the fact that her family was in the situation of needing the support of a hospice a hard thing to get her head around.
Kelly said, “For me it was quite a difficult concept to accept. We asked them, is Freya going to die? They had replied and said yes you will lose her and put a couple of years in time scale wise. However back in those days they didn’t know much about her condition and had limited answers to give us."
The word hospice sounded quite daunting to hear as parents.
After taking the leap to visit Charlton Farm the one thing that stood out was having the opportunity to meet other parents just like them who were also facing the unknown.
In the early days of visiting the hospice the family would never leave Freya. Kelly misunderstood what the hospice was all about and thought it would be a sad place. However the staff treated Kelly, Freya, Dave and Freddie as family.
Once the family began visiting Charlton Farm, Kelly’s fears quickly eased.
I expected sadness, but instead we found warmth, kindness and a place where we all belonged.
Kelly explains that having Charlton Farm there to provide support has been a lifeline. Living with Freya’s complex medical needs flipped Kelly’s world. Being her carer involved constant responsibility and learning new medications. Without a service like Charlton Farm Kelly says there would be a huge loss to the family.
Support at Charlton Farm has also been provided for Freya’s younger brother Freddie from the Sibling Support Team. Kelly says that in everyday home life siblings of a child with complex medical needs can easily be forgotten but “not at Charlton Farm.”
Charlton Farm is Freddie’s special place as well as Freya’s. When he has a stay coming up his face lights up with excitement. Freddie can be himself, have fun and not worry about anything else and that is something Kelly finds wonderful.
The hospice has been a vital space for Freddie. Kelly says,
He’s not overlooked there, he is valued and given space to just be a child.
Freddie often tells his peers at school about Charlton Farm and speaks so highly of it, like it is his second home. 3 years ago when one of Freddie’s friends experienced the loss of someone close teachers said that Freddie’s support for him was so special because he just understood and got it. Kelly believes this empathy has grown through the support they have received and has helped shape him into the caring person he is today.
The family have countless memories from their time at the hospice. With help from the Sibling Support Team, Freddie made a cake for his dad’s 40th birthday which was very special to him. He has also had the opportunity to meet the Bristol Bears rugby players; a dream come true for Freddie who is a huge rugby fan.
The family have formed close friendships with others who use the hospice.
Kelly says these friendships are different to the ones they have at home and that she has made some of her closest friends there, people who “live and breathe what I am living.”
Sometimes just having a cup of tea in the dining area and talking about our day has formed some of my closest bonds.
Kelly feels that the friendships she has formed have helped turn the sadness of their journeys into something positive.
Freya loves spending time in the hydrotherapy pool and Kelly says she is “part mermaid” as she splashes and squeals with delight. Kelly is able to get into the pool with Freya and Freddie, enjoying precious quality family time together. Freddie loves diving underwater, and Freya laughs as balls are thrown to him.
Freya attends a local school and has enjoyed educating others on the support her and her family receive at Charlton Farm. She made a presentation to showcase information and photos of memories of her time at the hospice to all staff including the Senior Leadership Team. Many of the staff support children with complex needs, some of whom also attend local hospices like Charlton Farm. The presentation offered real insight into hospice care, the work Charlton Farm does and raised awareness to staff who didn’t know about it or where it was located.
When asked what she would say to another family thinking about using Charlton Farm Kelly’s message is clear;
“Do it, don’t be frightened by the word hospice. It empowers you as a family."
The hospice is a blanket of comfort and it’s there for families like ours.
"It is incredibly important to have places like Charlton Farm when you’re navigating life with a child who has complex medical needs. There is never any judgement. You don’t realise how much you need that support until you have it, and then you can’t imagine life without it."
