Cheeky Preston loves spending time in his room and watching videos on YouTube, like many other teenagers. But since he was diagnosed with a complex degenerative condition at 18-months-old, he’s gradually lost the ability to move, speak and do most of the things many of us take for granted. Mum Laura shares the inspirational story of her resilient boy, and explains how Bluebell Wood has become their favourite destination.

After failing to hit a developmental milestone as a toddler, Preston was diagnosed with a rare life-shortening condition, which was eventually diagnosed as a progressive and devastating neurological disorder called RTD.

In the year following Preston’s initial diagnosis, his hearing and eyesight deteriorated and he began to struggle with food and drink.

“Every day was different – there were so many appointments and tests,” said Laura.

“I don’t know how I got my head around it all really. You just have to be there for your child. We just had to plod on and do the best we could.”

Over the next few years, brave Preston battled through everything life threw at him, including more than one serious operation. He found independence in his wheelchair and made lots of friends at school.

But when he was 10-years-old, a bout of pneumonia led to a three month stay at hospital.

“I remember one morning when he stopped breathing. It was utterly terrifying and I was hysterical. He then had another respiratory arrest and I sat up all night watching him. I didn’t dare go to sleep.”

Ever the fighter, Preston pulled through and was eventually able to go home, with an array of new medical equipment to help him breathe. Through sheer force of will he regained his strength and went back to school.

Then in 2016, Preston suffered a heart attack in the school playground and lost so much weight that he was down to just two-and-a-half stone. Fortunately, a new treatment slowly helped Preston regain the weight he’d lost and the slow road to recovery began.

It was then that the family found Bluebell Wood. Initially reluctant to visit, other families who visit the hospice encouraged them to embrace the support on offer.

“We absolutely loved it - everything about it was just perfect.

"Preston needs 24/7 care and it’d been so long since I’d had a break, if I’d ever really had one, so it was amazing to have other people to help with his care."

“I stayed with him at the hospice, but the team did everything for him” 

Preston’s heart attack in the school playground had left him petrified of going outside – but the care team at Bluebell Wood were there to offer a helping hand.

“He’d barely been outside in three years despite our best efforts. But then during one visit to the hospice, the staff encouraged him to go outside and conquer his fear.

“I couldn’t believe it – it was amazing. I’m so proud of Preston and everything he’s overcome. I couldn’t do what he’s done.”

Now Bluebell Wood has become Preston and his mum’s favourite ‘holiday’ destination.

“We haven’t been on holiday since he was nine so it really is like a holiday for us.

“I'd do anything at all to see him smile; Preston loves the hospice and we always get spoilt rotten."

"I don’t know what we’d do without Bluebell Wood".

Help Bluebell Wood be there for families like Preston's