Olivia is a bubbly, chatty teenager who loves singing, and all things Harry Potter. She lives in Sheffield with her mum and dad, Michelle and Russell, and her brothers, Harry and Finley, and loves spending time at Bluebell Wood. Michelle shares her story:

“Up until she was five years old, Olivia reached all the normal milestones for a girl her age. We didn’t realise anything was wrong until her teacher asked to speak to us after school one day. She’d noticed that Olivia wasn’t writing her numbers inside the squares of her maths book, and when she asked her about it Olivia said ‘what squares?’ That’s when alarm bells started ringing. We mentioned this at her next eye appointment, and the optician ordered lots of tests. In the meantime things got progressively worse and she started needed a magnifying glass to read the print in her books. When we got the test results back we found out her condition was neurological and, after a blood test, she was diagnosed with Juvenile Batten’s Disease.

“The neurologist told us that it was genetic, and that there was no cure; she’d lose her vision, then her motor skills would decline, then she’d stop being able to speak. I remember sitting in the backseat of the car with Olivia after that first appointment and crying my eyes out. Olivia looked over at me and said ‘mummy, why are you crying?’ but I just didn’t know what to say.”

Michelle and Russell decided to start making memories for Olivia to remember even after her short term memory started to go. They visited Florida together and went to Harry Potter World. Olivia also started learning ‘Moon’, a system to help blind people read, and began using a cane. She went completely blind when she was nine years old, and started using a wheelchair when she became a teenager. With the help of her friends, family and teachers, Olivia stayed in mainstream school until she was 15.

“In the past few years Olivia’s condition has really taken its toll. She started having seizures when she was in secondary school, and she’s lost a lot of muscle tone since she’s started using a wheelchair. Sometimes I try to close my eyes and imagine what it must feel like for Olivia, but it’s not the same, it must be so difficult for her. But despite all that, she’s just so happy. She has such a caring relationship with her brothers, especially Harry. He’s the one that can come if she’s upset and turn her mood around.”

In September 2017, Michelle felt it would be a good time to introduce Olivia and her family to Bluebell Wood. She said, “The first time we came to look around we didn’t know what to expect but as soon as we spoke to the care team all our worries melted away. The staff know Olivia so well, and I feel so relaxed whenever we’re there. When Olivia and I stayed over for the first time I told the nurses to wake me up if she needed anything. It took me a while to fall asleep, but the next morning I woke up knowing she must have been alright – in fact, even after having breakfast, she was still fast asleep!

Sherry, one of our Community Support Workers, often looks after Olivia when she visits the hospice. She said, “I’ve got to know Olivia really well, and when she comes in she loves singing along to Westlife or getting her nails painted. She’s very chatty and she loves telling me all about her family, her brothers in particular, especially while we’re sat eating pizza and chips which is her favourite meal!”

Michelle added, “Bluebell Wood is such a friendly, welcoming place. I love coming up to the hospice and just having a coffee, while Finley runs round in the garden or Olivia watches a DVD. I can just forget about home for a bit and not think about everything that’s going on around me. Coming here was a really good decision for our family, and I know we can live our journey now, with Bluebell Wood by our side.”