Tim Haywood has missed out on many of the things most teenagers take for granted. But throughout his lifelong battle with a chronic genetic disease, his loving family and brilliant sense of humour have given him strength. Mum Alison shares their story, explaining just how important Bluebell Wood is to their whole family.

“Over the first year of his life Tim met his milestones, but he was late at walking and fell over frequently,” said Alison.

“As he got older he seemed generally weaker than other children of his age.”

Her fears were confirmed when he started school, marking the beginning of a long and arduous battle to get a diagnosis. 

“Tim had various tests for muscular dystrophy, all of which came back negative. By this point we were in a constant state of anxiety – no one knew what it was.

“Then when he was five he took a really big downturn. We’d pick him up from school and he’d be so lethargic that he couldn’t even eat an evening meal and he’d just lay there.

“It was incredibly worrying and we didn’t know where to turn.”

Tim’s condition continued to deteriorate until he was around six-years-old; his family desperate for answers all the while. He was eventually referred to specialists at Great Ormond Street Hospital in London.

“It was a huge relief,” said Alison.

“When you look back it was only a few years but it felt like forever. When someone you love is just lying on the floor and can’t function, and you just don’t know why, it’s so difficult. Because we didn’t have a diagnosis we had no support whatsoever.”

Tim was diagnosed with Mitochondrial Disease, a complex condition which can vary wildly from one person to the next.

“The mitochondria are in every cell in your body and they’re like the battery of it. If they’re not functioning properly it’s basically like having no batteries,” said Alison.

“It’s classed as a rare condition but the mortality rate is higher than cancer because there’s no known cure or treatment.”

Tim’s condition, which means he has to be fed through a tube, does not affect his cognitive abilities.

“He’s incredibly bright, it’s just his body that’s letting him down. It’s a cruel thing as he understands it all completely.

“A recent test showed that his IQ is high enough for MENSA – he’s definitely more intelligent than me now.”

In 2018 the family reached crisis point, leading to a referral to Bluebell Wood Children’s Hospice.

“Bluebell Wood is a fantastic support network, not just for Tim – but for the whole family.

“Tim has music therapy, respite, short breaks and goes to the youth group and we also use the sibling and wellbeing groups.

“I’d go back to what a friend told me when we were first referred – they wrap you up in a blanket and look after you as a family.

“Under the roof of Bluebell Wood they meet every need we could ever have. It’s just a huge support network for all of us.”

Tim's condition means that he misses out on most typical teenage activities, so Bluebell Wood’s various events and activities are all the more important.

“I can’t put into words how important it is for him,” said Alison.

“Tim can go months without having the opportunity to do anything sociable so it makes a huge difference to him.

“He looked forward to the recent Vegas Night at the hospice for weeks and he absolutely loved it.”

Tim, who always has a smile for those he meets at the hospice, summarised how he feels about Bluebell Wood beautifully, saying:"I didn't really know what to expect when I first visited, but I've enjoyed it since day one.

"Bluebell Wood has become like a second family to me."