Lucy Johnson, 11, lives with Lennox-Gastaut Syndrome, a rare and severe type of epilepsy, has global developmental delay and is registered blind.
She benefits from short breaks at our hospice in Milton, allowing her dad Andrew and mum Sharon, plus sister Katie, 13, and twin brother Liam, who she lives with in Soham, some much-needed respite.
Lucy suffered a seizure at 12 weeks old, initially thought to have been brought on by a temperature, but after another 14 in 24 hours she was diagnosed with epilepsy. The specific type was identified a year later following a series of further seizures.
Sharon explained: "At first we felt relieved that we were able to read about a condition and that we could see everything Lucy had been through was written down on paper in front of us.
"We were introduced to EACH at Milton and the hospice was nothing like we imagined. We were all made to feel very welcome in a fun and relaxed atmosphere, and when Lucy first started staying at the hospice we were allowed to stay with her as a family until we felt comfortable leaving her."
Lucy benefits from hydrotherapy at the hospice and has previously taken part in music therapy sessions.
"Hydrotherapy is really good for Lucy as it helps her muscles relax and helps her to cough up any secretions sitting on her chest, and when she stays in we can do other activities with her siblings."
We are always on hand to support its families. Last year Sharon broke her wrist, leaving her unable to give Lucy her medication, and Andrew had to work, so the care team at Milton stepped in to provide emergency care.
Sharon said the family had made many special memories during their time supported by EACH. As well as help with Lucy’s care needs, they have been fortunate enough to be given a holiday at Disneyland Paris, tickets to Disney on Ice in London and a break at Center Parcs.