Sophie's Rainbow Room Story...
At our Children's Hospice, we have our Rainbow Room, which provides a private, intimate and special place of rest for a child until their funeral. The room is open to any child, not just those of Rebecca House. Sophie's Mum Ali, tells us how much the room meant to her...
“Sophie never failed to put a smile on people’s faces, her infectious, cheeky personality made a lasting impression on all who were lucky enough to know her. Sophie grew up a healthy girl, meeting all her developmental milestones until the age of 5. We noticed Sophie was having difficulty with her coordination. After undergoing tests, Sophie was diagnosed with Juvenile Sandhoff Disease, a rare genetic lysosomal storage disease with no cure, we were devastated. Soon, Sophie struggled to walk unaided, her speech became slurred & she needed a feeding tube, this is when Rebecca House got involved.
I was reluctant about Sophie attending a children’s hospice as I thought it would be depressing; how wrong was I! I visited & from the moment I walked in could see the children were having a fun time & the care was outstanding. Sophie started attending daytime & overnight respite, which was invaluable as I could recharge knowing she was in the best care.
Sophie’s last year was extremely difficult. It’s terrible to see your child struggle & not be able to make her well. In April 2016 Sophie was admitted for end of life care. During the last 8 weeks of Sophie’s life we made many precious memories. We felt like we were in a home from home environment & concentrated on being a family, including her dog, Max, Sophie’s best friend.
When Sophie passed, she was moved to the Rainbow Room where she rested until the day of her funeral. The Rainbow room provided a personal, peaceful place where we could go a sit with her & we were able to play her favourite music. To sum up Rebecca House “Angels without wings”. They enabled us to say goodbye to our little girl in comfort & with dignity. We will always be grateful.”
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