Destiny's story

It was Christmas Eve when Destiny’s family first realised something was wrong.  

She had a seizure which lasted more than three hours and spent her first Christmas day in hospital.  

At just eight-months-old Destiny was put into an induced-coma and was diagnosed with Dravet Syndrome; a genetic disorder which causes a lifelong form of epilepsy.  

Mum Roxanne has bravely shared her daughter’s story.  “The seizures are hell,” she said. 

“Am I going to lose my baby? It’s always in the back of your head – worrying if she’s going to be okay.  

“After her diagnosis, I was left wondering how I was going to give Destiny the best life possible. 

“If you’d have said to me ten years ago that I was going to have a child with disabilities, I’d have told you it wouldn’t happen – but it does happen. 

“The seizures cause Destiny to forget what she’s learnt.  

“After talking and moving as a toddler, she had a massive seizure. I came out of hospital, and it was like having a newborn baby again.” 

The epileptic seizures also make Destiny’s Autism worse and impact her balance and behaviour.  

Bluebell Wood has been a lifeline for Roxanne and her family, allowing Destiny to thrive despite her condition.  

Eight-year-old Destiny is strong willed, loves to dance, playing on her iPad and even shredding paper. 

Roxanne said: “It’s about making the most of Destiny’s life and not letting the syndrome stop her.  

“I am absolutely blown away by her. Every milestone she’s reached has been unreal.  

“Destiny loves meeting other children, soft play and the trampoline. She could spend hours in the garden!  

“Bluebell Wood is a home from home and like family. I have always felt 100 percent supported and the Care Team adore my girl.” 

Roxanne added that a simple bit of ‘me time’ to watch television and relax was a huge relief as was the support offered to her son by the Family Support Team. 

“The sibling groups have helped my little boy to open up and talk about Destiny,” she said. 

“Without Bluebell Wood life would be very miserable and I can’t thank them enough. 

“From the bottom of my heart I want to thank everyone who donates and supports the hospice. Otherwise, so many families would be isolated. I can’t imagine what it would be like without it.” 

Make a difference to a child like Destiny by donating to Bluebell Wood