Leionna’s story

At just three-years-old, Leionna was diagnosed with Battens Disease – a rare, genetic neurodegenerative condition. The little lady enjoyed her respite time at Bluebell Wood, where she loved to be pampered.  

Leionna & family

Leionna was born in March 2006 and was a welcome sister for brother Logan. Their siblings Oscar and Albie came along in the next few years, completing the family.

Just before Leionna’s third birthday she was rushed to Chesterfield Royal Hospital after having what seemed like an epileptic fit. Soon after, she recovered and was back to her usual self running around in no time; chatting and playing happily.

But she started to suffer from recurring fits – a very scary time for the whole family. Hospital tests diagnosed Leionna with Battens Disease, for which there is no cure.

Her mum, Julie, said: “When I first found out, I just broke down. Leionna deteriorated very quickly after the diagnosis. She lost her ability to walk and started shuffling on her bum, then her speech became less and less until she couldn’t talk.”

Leionna was referred to Bluebell Wood for respite and her mum Julie was extremely anxious. Around a year after Leionna’s diagnosis, Julie visited Bluebell Wood for the first time.

She said: “I didn’t know what to expect but the staff were amazing from the very start. At first, I stayed with Leionna but through her journey at Bluebell Wood I started to leave her so that I could spend time with the boys. I knew she was cared for so well at Bluebell Wood and I trusted everyone completely.

“Leionna was such a strong character – a real ‘girly girl’ and a fighter. Staff at Bluebell Wood pampered her, she’d have her nails done and loved bling, shoes, outfits. She touched a lot of people’s hearts. At Bluebell

Wood, she could be herself, she would giggle and laugh; she loved the sensory room and everything about the hospice.”

Leionna passed away in 2014 and the family were able to say their precious goodbyes in their own time in the hospice’s end of life suite. “Bluebell Wood were there for me, both physically and emotionally. We couldn’t have done this journey without Bluebell Wood,” said Julie.

Now, Leionna’s brothers attend Bluebell Wood siblings group. They are supported at school and at home; helping to build their confidence.

“I don’t know what we’d do without Bluebell Wood and I can’t thank everyone enough for their support,” she added.

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