Before Leona was born, her parents knew there was a high likelihood she could inherit the same extremely rare genetic condition as two of her three siblings. She visits Bluebell Wood Children’s Hospice for respite.
The rare chromosome related condition has a spectrum of complexity and Leona’s affected in several ways including pancreatitis, bowel failure, limited speech and mobility. She and her two siblings are thought to be the only ones in the country diagnosed with it, so it’s been a hard journey for parents Jayne and Lee.
Jayne explains: “Leona has just had so much throNewwn at her. In one year alone she had nine operations, she was in hospital for such a long time that year and was so incredibly ill.
“But she’s such a little fighter, she just bounces back each and every time something new is thrown at her. She’s inspirational.”
The family first came to Bluebell Wood in 2014, after Leona had that long stint in hospital. They’d had months of staying on hospital wards, which meant little rest. “Walking in to Bluebell Wood for the first time was just like heaven; it felt like such a happy, relaxing place – like we were walking into one big, supportive family,” said Jayne.
Leona’s siblings with the same condition, Callum and Carys, are older than her. “We have three children with additional needs, which means we get little sleep or spare time; we’re often just exhausted. Going to Bluebell Wood for respite means we can totally relax and have a break from the regular demands of things like hospital appointments.
“Respite at Bluebell Wood means that myself and Lee are able to come and go for the weekend – last time we went to watch Sheffield Wednesday together. It’s great knowing that Leona is in the very caring hands of wonderful staff at Bluebell Wood.”
Leona loves being pampered and enjoys having her nails done at Bluebell Wood, she loves the sensory room and fun activities the play co-ordinators have in store for her. She also has a love of music, dancing and football; so activities can be centred around her interests.
Jayne added: “The team at Bluebell Wood have to know her character and she loves every minute there. Because the condition Leona has is so rare, very little is known about her life expectancy and she is often being put through treatments.
“At Bluebell Wood, she can be herself while everything is taken care of by the Care Team and it’s a break for us too.”
The couple and their children, including eldest daughter Kirsty, make the most of every minute. They have travelled abroad in recent years, taking all of the medical equipment with them.
“We want to give them everything possible in life. I am so incredibly proud of Leona – of all of my children. The next thing I’d like to do is find other people with the same condition,” said Jayne.