Like most children ‘Duracell Bunny’ Kai has got energy to burn. You’ll often find him at Bluebell Wood bouncing on the trampoline, whizzing down the slide and wreaking havoc in the soft play. But sadly his condition means that many of things he loves will become increasingly difficult as he gets older, making the support of Bluebell Wood all the more important. Mum Lindsay shares their story:

“Kai was very weak in the beginning but he’s gradually gotten stronger. But because of his condition he’ll start to weaken again as he gets older.

“That’s why he’s able to walk at the minute, but this will deteriorate over time.

“It’s one of those conditions that you just don’t know how quickly it will happen. It’s degenerative, but you don’t know when or how it will progress. It’s all just one day at a time.” 

Kai has Myotonic Dystrophy, a genetic disorder that causes a progressive weakening and wasting of the muscles.

“It affects every muscle in the body,” said Lindsay.

“That’s all your muscles – so it affects his arms, legs, windpipe, heart – you name it.”

There’s no treatment for the condition, just regular check-ups to monitor its progression. Despite this, Kai’s done things he was never expected to achieve – all through sheer force of will.

“Kai just never stops, he’s so determined. I can’t believe how far he’s come.

“He learnt to crawl without having the power to lift his head up and even now, with all the issues he has with his feet, he still manages to walk. We’re so proud of him.

“I’m just dreading when he can no longer walk. It’s going to be heartbreaking for him because he’s so used to doing what he wants to do.”

At Bluebell Wood, the family have found a much-needed support network to help guide them through the challenges ahead.

“When we first visited it was lovely,” said Lindsay.

“It was not what I expected at all. I thought it would be more clinical, like a hospital, but it’s really not like that. It felt like a home away from home straight away.”

Curious Kai wasted no time in acquainting himself with all the hospice has to offer.

“There was so much for him to do. He loved the trampoline, the soft play and he had every toy out there was. He absolutely loved it.”

Now Kai, who needs 24-hour care, has become a regular visitor to Bluebell Wood, giving his family a much-needed break.

“It’s definitely helped us a lot. Kai’s not a very good sleeper so even something as little as having a good night’s sleep makes a big difference.”

Lindsay still find it difficult being away from Kai, but she knows it’s the right thing for the whole family.

“When we visit for respite care I hate the thought of leaving him, but within ten minutes I realise just how much I needed a break.

“He just loves being there. The care team all know and understand him, and all his quirks. It’s a huge reassurance for us to know that he’s in such safe hands.

“They don’t treat him as if they’re just looking after him for the day – it’s so much more than that.

“They treat him like one of the family.”

Find out more about how you can support families like Kai's here