On the 15th April 2024 we sadly suddenly lost our beautiful girl, Phoebe.

Phoebe struggled as a baby with hitting milestones and many illnesses and at the age of 3 she was diagnosed with RETT Syndrome. Rett syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops. This disorder causes a progressive loss of motor skills and language. Phoebe was unable to talk, communicate, sit, stand or walk and was fed via tube due to unsafe swallow. She also suffered seizures that would come and go and most of all her breathing (sleep apnoea) which led to her needing bipap ventilation and oxygen at night. As well as many more daily issues and struggles.

The day we come back from holiday Phoebe sadly went down hill and after spending a week in hospital where she continued to go down hill rapidly we had to make a heartbreaking decision whether to intubate her with highly likeliness that she wouldn’t pull through and what was happening couldn’t be cured or to transfer over to Charlton Farm hospice to be together as a family and spend our last moments with Phoebe, making her comfortable, making memories and feeling more homely in their surroundings but with medical people by us when we needed.

We chose to do this and Phoebe survived another week to which we done so much memory making and cuddling. And Charlton farm made this happen with all the supplies (hand casting/painting/prints/teddies etc), feeding us, bedrooms just for us where we could sleep next to her. Beautiful country side and animals on view. And a sibling team which was great to look after Harvey and do fun things with him and support him. And further caring for Phoebe in their chapel of rest after she passed.

They were so great and nothing was too much of an ask. All the staff were amazing and not only medically trained but also the best supporters, friendly, warming, caring and funny. Just so natural when it can be so hard for them too. But they made you feel so at ease.

They rely on just charity funding, the things they do behind closed doors is just amazing so we want to give what we can back from what they gave us in the hardest times of our lives.

Not only do they look after disabled children so families can have a rest they also do end of life care.

Truly amazing place and people.

Phoebe Myah Rose Pring

2016-2024

Forever 7 x