Ruby was a cheeky, happy girl, who loved Peppa Pig, playing with other children, and going outside on windy, rainy days. Sadly, after being diagnosed with a severe form of Niemann-Pick disease (NPC) Ruby stopped being able to move, sit and swallow, and in April 2017, she passed away at Bluebell Wood at just three years old. Her mum and dad, Kelly and Mike, share her story.

Kelly said, “When Ruby was around ten weeks old, she developed jaundice. The doctors thought she had a blockage in her bile duct, so they sent her to hospital. After lots of tests they ruled this out, and Ruby started to return to normal, although her enzyme levels were still really high. Eventually, the hospital decided to test for NPC – an inherited neurodegenerative disease – by doing a skin biopsy. It was awful to watch Ruby go through that.

“After six months we were told the devastating news that she had NPC. Suddenly everything felt uncertain, so we decided to make that Christmas extra special as we didn’t know what would happen next.”

Mike added, “Until Ruby was one, she hit all her normal milestones; she started learning words, was a fast shuffler, and could sit up by herself. The first sign that she was developing symptoms was when she was two years old and we noticed tremors in her arms when she was reaching for toys. From then on her symptoms moved so fast and by our next hospital appointment in January 2016, she’d lost the ability to sit unaided and she couldn’t use her hands to play or paint anymore. The consultants were shocked at how quickly the disease had progressed.”

Kelly said, “We were introduced to Bluebell Wood that same year. When we first came to visit, I was absolutely terrified, but once we’d stayed overnight we started to feel confident leaving Ruby there. Ruby needed 24 hour care, so it was good to know we could drop her off at the hospice and get chance to recharge our batteries. The Care Team also helped co-ordinate Ruby’s medical care, and make a plan for when the worst happened, and we needed end of life care.

“Ruby started deteriorating even further in March 2017. She became very sick, and her temperature was really high. Two Bluebell Wood nurses came out to see her, and in the end we decided to take her to hospital.”

Mike added, “She just kept getting more and more ill. By this point she hadn’t had any nutrition for two weeks, which was really worrying. She was very weak and asleep most of the time, but we kept Peppa Pig on in the background so she would hear something familiar when she woke up.

“A week later Ruby was scheduled to have a feeding line put in to help her get nutrition and allow her tummy to rest. The consultant came to meet us as she came out of surgery and told us that she’d had to have a colonoscopy during the surgery, and had caught an infection which had caused severe Crohns Disease. We were told this was a complication of Ruby’s NPC and that because of this, there was no way to feed her. Fiona, the consultant at Bluebell Wood, came to see us and she could tell Ruby was really distressed; that’s when we decided to come to the hospice and have some proper time together, rather than unnecessarily try to extend her life in hospital.”

Kelly said, “As soon as we arrived, we felt so much calmer. The Care Team gave us time to focus on Ruby; playing in the sensory room, painting her nails; and taking her out in the garden. They gave her medicines so she wouldn’t be in pain, and after she passed away, they made casts of her hands and feet, and helped us change her into a beautiful dress for her funeral.

Diane Price was one of the activity co-ordinators who spent a lot of time with Ruby before she passed away. She added, “Ruby loved doing fun, tactile activities with the Care Team. We gave her lots of things to touch that were soft, or that she could shape. She enjoyed doing things that she was familiar with, and she’d always let you know what she did and didn’t like. I’m glad we could help Ruby and her family make lots of special memories, especially near the end of her life.”

Kelly said, “I can’t explain how thankful I am to all the incredible staff at Bluebell Wood, for everything they did, and still do for us. They helped us make Ruby’s last few weeks so memorable and happy for her; without the hospice, Ruby’s all-too short life would have been so different.”

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