Seven year old Phoebe was first referred to Children’s Hospice South West’s Charlton Farm hospice in Wraxall when she was just 3 years old.
She was supported by the team at Charlton Farm until she died at 7 years old.
When Phoebe was born, mum Jessica and dad Josh took their baby home thinking she was a healthy, but the couple, who met when they were at school, started to become concerned, something was wrong when Phoebe started to choke on her milk when being fed.
Jess took Phoebe to the doctors for a check-up and was told it was likely to be reflux or viral.
Phoebe spent the next 6 weeks in hospital undergoing a raft of tests which revealed she had an unsafe swallow. It was decided by health professionals, that she should be tube fed.
At the age of 3, after suffering regular bouts of being unwell, Phoebe was diagnosed with Rett Syndrome – a rare, genetic disease that affects brain development and causes severe disability.
Phoebe was then referred to Charlton Farm.
"The first time we came it was just amazing, we had our own room with Harvey and Phoebe was looked after by the care team," said Josh.
It was the first time we could properly relax, knowing that we could go down at any time to see Phoebe or call the team in the middle of the night to check in on her.
Josh and Jess say that their stays at Charlton Farm allowed them to spend time with Harvey and their other daughter Tilleigh who was born in the summer of 2023.
“It gave us time to do things with Harvey and Tilleigh as a family, we always, always tried our best to include Phoebe in everything we did, but there were some things that practically we just could not do and wanted to keep her well from certain weathers,” said Josh.
Phoebe, who was unable to walk, started at Baytree School in Weston-super-Mare when she was 5 years-old.
Baytree School was amazing and Phoebe loved it there, she always had a smile on her face and the staff said they could hear her laugh all the way down the corridor.
Harvey also shared a special bond with his little sister
“He has always been so protective of her, he would spend hours playing with her and taking care of her, making sure she didn’t do things like pulling her feeding tube out. He wanted to keep her safe,” said Josh.
Over the years the family were supported at Charlton Farm, spending their resilience stays spending time together and making special memories.
Phoebe was a very chilled child, and although she couldn’t walk or sit up on her own, she loved her time at Charlton Farm.
After a family holiday, Phoebe's health deteriorated and her family decided to take her to Bristol Children's Hospital.
"She continued to go down hill in hospital and for the first time ever we just didn’t have an answer to what could be wrong with her. We decided to go to Charlton Farm for the end of phoebes journey to make her feel cosy, calm and be in the most perfect, beautiful setting."
“Even near to the end she was still managing to laugh and smile,” said Jess.
“We were initially convinced that she may turn a corner and thought to ourselves we must have got it wrong, as she held on another week at Charlton farm and surprised us all but sadly the outcome wasn’t what we hoped.”
Phoebe, who loved going out in the car and enjoyed rapper drake and drum and bass music, died at Charlton Farm with her loving family around her, with Jess and Josh lying cradling her in her bed.
Being at Charlton Farm allowed us to spend time together as a family in Phoebe’s final days without it feeling clinical,” said Josh.
"We did things like make casts of her hands, prints, took lots of photos and enjoyed simple things like watching Alvin and the Chipmunks together. We were also able to spend that time with her after she died and the family were able to say their goodbyes. Everything was done at our pace. The hospice were great with supplies needed for these things to happen and even the staff were amazing helping us with some things during a very upsetting time, which must be super hard for them but they still got on with it and supported us."
The family also praised the hospice’s sibling team in supporting their other 2 children. “The siblings team was also incredible in supporting Harvey,” said Josh. “That support continues for us now as a family which is so invaluable. It is such a comfort to us all knowing the Charlton Farm team is always there for us.”
They made sure we had food and anything we needed and were always there for support.
The family and their friends have been busy fundraising for CHSW since Phoebe’s death.
Jess added: “As a family we have experienced first-hand the amazing work of Children’s Hospice South West and the difference it makes to people like us."
We are fundraising to ensure this incredible support remains in place for other families like ours.