The J's young adult Sophie

Sophie’s story

Sophie, 18, lives with her parents, Allison and Stephen, and her younger sister Charlotte, 16. When Sophie was two and a half she was diagnosed with Rett Syndrome, a rare genetic disorder that mainly occurs in girls. Sophie is entirely dependent on others for her care needs and cannot communicate verbally.

When Sophie was 16 she started to receive care from The J’s Hospice who now provides respite care in her home.

“When The J’s Nurse first came round she was very friendly and put us at ease straight away. I thought a hospice was only for people who are really poorly but she explained the range of services that The J’s Hospice provides including specialist nursing, advice, respite care in the home and social groups and we were very impressed.

“They help in other ways too. I needed to order some medicine from the doctor and, if I’d sorted it out myself, we might have had to take Sophie to the surgery which isn’t easy. She gave the doctor a call and it was sorted within minutes, which is a huge benefit to me and reduces the stress associated with these things. She also follows up on blood test results for us. They also arranged for Sophie to have six weekly music therapy sessions at her school which she really enjoys.

“We feel really lucky that we have The J’s Hospice to support us. Life would be much more difficult without the additional care and respite and the staff are lovely. You can tell that it’s more than just a job for them and they are genuinely interested in Sophie. They’ve built a great relationship with the family and they make her smile and laugh!”

Allison, Sophie’s Mum

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Published in 2018

We feel really lucky that we have The J’s Hospice to support us. Life would be much more difficult without the additional care and respite.

Allison, Sophie’s mum