Rudi was five months old when his family began to question the rate of his development. A few weeks later, they were given the Spinal Muscular Atrophy (SMA) diagnosis that would change the course of their lives. But throughout brave Rudi’s short life, he’s maintained his infectious smile and his family have vowed to stay positive.

Rudi’s mum Daniella tells their story: “When Rudi was about five months old my mum said he should be starting to sit up now, but I said he’ll catch up he’s probably just a bit late.”

A couple of weeks later, Daniella took Rudi to their GP. 

After being referred to the hospital, Rudi was diagnosed with SMA Type 1 -  an incurable genetic condition that makes the muscles weaker and causes problems with movement.

“I’d already convinced myself it was going to be SMA and I almost thought I’d got my head around it. But there was always the hope that it wouldn’t be that.

“It just felt like everything was pulled away from us. I cried all the way through the hospital, I think I broke down on one of the nurses in tears. It’s all a bit of a blur.

“I remember asking at the hospital what kind of treatments are available and they said there’s no treatment, it’s just a case of caring for him as well as you can.

“It’s a case of waiting for the inevitable while keeping him comfortable and making sure he has what he needs.”

When Rudi was about 14-months-old, the family had their first real scare when a cold developed into the more serious RSV virus. After a stay in Chesterfield Hospital, Rudi was moved by ambulance to Sheffield Children’s Hospital where he stayed for three weeks.

“He couldn’t breathe for himself. He nearly died two or three times. I stayed there every night and I barely ate throughout.”

The family had many difficult conversations in the hospital, with doctors telling them Rudi may never return home. But courageous Rudi battled on.

“Some people would say you’re burying your head in the sand. But what choice do I have? I can’t just sit here and cry all the time. It’s not going to benefit him.

“Whether he has six months, a year, five or ten, if the inevitable does happen, I’ll do my crying then.

“Why not stay positive? I want to enjoy the time we have together.”

The family was introduced to Bluebell Wood after Rudi’s diagnosis, but didn’t become regular visitors until much later in their journey.

When Rudi was almost two-years-old, they visited the hospice - and they’ve not looked back since.

“A couple of short breaks at home with community nurses and I eventually got up the courage to leave him for a short while. 

Just to go for a coffee or a short walk – I’d never really left him before. 

“Then I got a letter though the post about Busy Bees and Wriggle and Rhyme sessions.

“I decided to give it a try. We had a really good time and he absolutely loved it. I got to know some of the other families and got chatting to them.”

They are now regular visitors and Rudi’s always ready with a cheeky smile for all he meets. 

“Everyone’s welcoming, understanding and has empathy for our situation.

“Nothing’s ever too much trouble. And I’ve learnt a lot of different things there too from a care perspective.

“It’s a safe and comfortable place for us to go – that’s what it feels like to me.”

Catherine Holland, Activity Coordinator at Bluebell Wood, said: “Rudi really enjoys all the activities we do here and is so full of mischief.

“He’s a fabulous little boy and is always such a pleasure to be around.”