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 29, took Phoebe to the doctors for a check-up and was told it was likely to be reflux or viral. Josh 29, said: “We were both convinced there was something more to it, so we took her to Bristol Children’s Hospital for more checks.”
Phoebe spent the next 6 weeks in hospital undergoing a raft of tests which revealed she had an unsafe swallow. Instead of being able to swallow her milk, it was going into her lungs, causing her to choke and affecting her breathing. Phoebe was also diagnosed with hypotonia, a disease which affects the muscles, and it was decided, to keep her safe, that she should be tube fed.
At the age of 3, after suffering regular bouts of being unwell, Phoebe was rushed back into the children’s hospital suffering with pneumonia and apnoea episodes.
During another 6 week stay in Bristol Children’s Hospital, the family were dealt the devastating blow that Phoebe had Rett Syndrome – a rare, genetic disease that affects brain development and causes severe disability. “To be told that just rocked us as a family,” said Josh.
The family then began to research Rett Syndrome, reaching out to other families with children with the condition. Phoebe was then referred to Charlton Farm.
“We were struggling to cope, we had our son Harvey, I had a full time job and Jess was Phoebe’s full time carer,” explained Josh.
“Looking after Phoebe was a full time, 24 hour a day job. Phoebe needed a mask at night to help her sleep sometimes with oxygen. Jess and I took it in turns monitoring her levels most the night. We never really slept properly.”
The referral to Charlton Farm proved game-changing for the family.
"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 the resilience 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.
The family went on holiday to Paignton in April this year. “Phoebe hadn’t been well while we were away,” said Josh. “She had been chesty and bunged up and when we returned home on Monday, we were concerned something was wrong.”
The couple checked Phoebe’s SATS and then called an ambulance. Her heart rate continued to drop and she was then rushed into intensive care at Bristol Children’s Hospital.
“Even in ICU she was still managing to laugh and smile,” said Josh.
“We were initially convinced that she would be fine and thought to ourselves we must have got it wrong.”
Sadly, doctors said Phoebe’s heart and brain was failing and there was nothing else they could do for her. The family returned to Charlton Farm to spend their final days together.
Phoebe, who loved going out in the car and enjoyed 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,” 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 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.”
The family and their friends have been busy fundraising for CHSW since Phoebe’s death.
“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.”