Making music with Freya at Little Bridge House

She has bilateral perisylvian polymicrogyria (BPP), a rare brain disorder which causes complex epilepsy, global developmental delay, dysphasia, left hemiplegia, scoliosis and speech delay, among many other conditions.

Mum Claire said the first time the family came to stay at the hospice was ‘absolutely amazing’.

“There is nothing but kindness and warmth from the second you arrive and nothing is too much trouble,” she said.

The staff at the hospice are more than just staff, they are our friends.

"They are like the long lost family you never knew you needed or even had and there is always someone there at the end of the phone if you need them.

“People often think of a hospice as a sad place and of course at times they are. But there is so much joy and laughter there too and I would encourage everyone to visit Little Bridge House as soon as they are able to hold open day tours again.

"Freya now stays by herself as we feel completely confident and at ease in the trust we have in the care team to meet each one of Freya’s needs and to respect our wishes as her parents.”

The support network at Little Bridge House doesn’t stop with the care team; Claire has also found support among other parents who visit the hospice, including other families whose children have the same condition as Freya.

“Up until 2019 we had never met another family that lived with polymicrogyria. that was until two other mums recognised Freya from a Facebook post,” said Claire.

“I’d never met them but they knew who Freya was, and by some absolute chance they both had children with polymicrogyria and were supported by Little Bridge house. The care team arranged for us to meet up at the hospice and I couldn’t have wished for anything better. 

“I can’t explain how that felt for us as parents. To meet another family that understands all the challenges that come with this rare condition day in, day out, and to just be grateful for even the hardest of days, was just a wonderful feeling. 

“We are all now friends and are able to catch up with each other on social media to see how each of our little heroes is doing.”

Freya enjoys visiting the hospice to use the hydrotherapy pool and gardens but her favourite thing to do is make music with Little Bridge House music therapist Ceridwen.

Freya is a girl whose main aim in life is to have fun and she certainly makes the most of every moment in any given day when she is staying with us.

“Whether she is singing ‘Frozen’ or drumming or dancing or simply sitting at the piano and improvising, Freya certainly makes the most of her music therapy sessions and really enjoys making very loud music sometimes.

“She certainly wasn’t too shy to make lots of noise for the Duchess of Cornwall’s visit last summer! Freya played the piano very loudly and the Duchess was very entertained and clapped along with great enthusiasm!”

Ceridwen says that Freya has a more sensitive side too: “Sometimes her music-making is really gentle, as she just sits at the piano and improvises with me – you can really hear how she sings at the same pitch as me and listens really carefully and responds to my singing as I, in turn respond to hers.

“Freya can sing along to almost any Disney song that I play for her as well. Pre-Covid, she would often draw a crowd and other children and care team members would gather to hear her perform and join in with her singing. There is nothing Freya loves better than an audience! 

She is like the Piped Piper and gathers everyone around her to make music and sing with her.

"Even if we can’t all gather together in one room, Freya’s voice can still be heard loud and strong as it rings out through the hospice for all to hear.

“The other children and families love hearing her sing, and it also gives the staff a real boost to hear her music.”