Alex’s life is very different to that of most children. He’s been devastatingly close to losing his big brother Thomas, whose condition means his family never know what’s around the corner, on more than one occasion. Alex just wants to enjoy life and have fun – and that’s exactly what he does at Bluebell Wood.

Whether it’s visiting the hospice with Thomas and his mum and dad, or taking part in Bluebell  Wood’s Sibling Support groups, there’s always plenty of fun to be had.

“Bluebell Wood is a hospice for poorly children like my brother, Thomas,” said Alex.

“It’s a really fun and happy place and there’s always lots of fun things to do. I think Thomas really likes it too. They do lots and lots to help him.”

As well as visiting Bluebell Wood with his family when Thomas visits for respite care, Alex has been to various events at the hospice and he loves the Sibling Support groups where he gets to meet other children in similar circumstances and take part in plenty of exciting activities.

Whether it’s whizzing through a forest on a zipline, making a memory box or just playing games and having a giggle at the hospice, there’s never a dull moment.

“The sibling groups are lots of fun and it’s good to meet new friends and talk to different people,” said Alex.

“My favourite ever time at the siblings group was when we went to Go Ape – it was so much fun.”

Alex’s brother Thomas, 13, has a rare progressive neurological condition called Batten Disease which affects every aspect of his life.

Thomas began to have issues with his speech, balance and mobility when he was very young, but it wasn’t until he was 12? years old that he received the diagnosis his family had been searching for.

The future is very uncertain for Thomas, but his family take comfort in the fact that they have at least one certainty in their lives – Bluebell Wood’s support.

“Having Bluebell Wood in our lives really does mean so much to us as a family,” said the boys’ mum, Claire.

“It’s given Alex somewhere to go and speak to someone if he ever needs to. 

"Children don’t always want to talk to their parents and I know he sees how busy we are caring for Thomas, which is a 24/7 responsibility.

“There isn’t much else out there in terms of support for siblings so it’s very important to us.

"It also gives him the opportunity to meet other children in a similar situation, which he doesn’t really get anywhere else.

“It’s the same for us as parents too – we always enjoy meeting and chatting to other parents and carers when we visit the hospice. There’s always so much to talk about and so much to learn!

“It can be very difficult to speak to someone about your feelings when someone you love is so poorly.

So to know there’s always someone there if you need them is a huge weight off.”

Help us be there for families like Alex and Thomas'