Leoni's story

Despite being born with a rare condition delaying growth and development, Leoni is strong, brave and happy and never gives up. 

Her mum and dad, Vicki and Darren, told us about their wonderful daughter and how a rare condition she was diagnosed with at three years old (called Wolf-Hirschhorn Syndrome), affects their lives.  

“Leoni can’t talk but she knows more than you think,” said Vicki. “She is so funny and just loves to shout out loud!” 

Following a normal pregnancy, Vicki and Darren were shocked when doctors told them they suspected Leoni was blind.  

“We were eventually sent home but a week later, we just felt something wasn’t right,” Vicki said. 

“Leoni wasn’t feeding very much but was sleeping for hours at a time. We took her to the hospital to get help and after a few tests, it became an emergency as she had lost weight. We were taken to specialists in Leeds Children’s Hospital.” 

After surgery at three weeks old, Vicki and Darren went through the unimaginable. Doctors discovered Leoni had two holes in her heart amongst other complications, they were told to say goodbye to their baby girl.  

But defying all the odds, Leoni survived and was given a life expectancy of two years. The family then went home and adjusted to their new life.  

When visiting hospital for a further operation three years later, the surgeon who performed Leoni’s previous surgery was astounded by Leoni’s progress. Vicki said, “He ran into the room to see us, and he couldn’t believe Leoni was still alive, he cried in disbelief! It just showed how incredible she is."

With the help of family and friends, Vicki and Darren navigated Leoni’s condition and all of its challenges. However, when she turned five, Vicki’s dad was diagnosed with cancer and the couple had reached breaking point.  

Vicki said, “Bluebell Wood was our rock at that difficult time. Leoni came for short breaks so that I could help my dad. We were able to come and go as we pleased for things like teatime at the hospice, which was so nice knowing she was well looked after every time we left.” 

“We became in our own little bubble for a few years after that and Covid was really challenging because we were always worried Leoni would pick up illnesses if we went anywhere,” Vicki said.  

After illnesses and stays in intensive care, Leoni’s family reached out for support from Bluebell Wood again.  

“We realised we needed more support and craved something familiar so we came for a short break at the hospice. It’s peaceful and calming at Bluebell Wood and we feel so comfortable here. We can blend in with everyone else who is going through similar situations.”

Leoni is now almost 19 years old and enjoys coming to the hospice for short breaks and youth group activities.  

Darren said, “Leoni can be a child here, which is what she really needs.” 

“It’s always on our minds that Leoni’s life could be cut short at any time but knowing there are people here who understand and can help us, feels so comforting. I just can’t put a price on what the hospice does for us, it’s an absolute godsend for our family,” said Vicki.