Starlight Stories

Meet Leon

“We got a phone call to say we could come to Brickhouse on a family holiday and we were just over the moon.”

Last November, Leon, his mother, Sophie, and his sister, Isabella, joined us at our Brickhouse Farm Cottages break. Leon is eleven now, but was diagnosed with duchenne muscular dystrophy, a life limiting condition, at four years old.

He’s started to lose some physical abilities, and as a previously active child, the change has been difficult to get used to, both mentally and physically. Even so, Sophie describes Leon as “such a sociable boy, he has a really funny sense of humour – he loves a bit of banter.”

“It’s taken us a while to get used to our ‘new normal’ with Leon,” his mother explains. “Not only is he suffering physically, but it also affects him mentally; he’s old enough now to know what’s going on so he has a lot of frustration and anxiety. He’s been going to a psychologist which really helps, he gets lots of tips to deal with his mental health. The psychologist actually uses some of the toys and resources that Starlight have donated.”

During his stay at the hospital when he was five, Leon also had a play specialist. Sophie describes that “it was so helpful having someone there to help support him, but also me. It was such an emotional time and keeping a five year old entertained as well is really tough, so they helped by playing with him and bringing him toys.”

That’s why their trip to Brickhouse was a great distraction and opportunity to have fun!

“We were so excited and had something to look forward to. Knowing that it would be fully accessible for Leon was a huge relief. Every time we go out, we have to call and check that he will be able to get around in his wheelchair, it really limits what we can do.

“At Brickhouse (Leon) could join in with everything, loved the swimming in the hydrotherapy pool and the drumming workshop, and all of it he could do with his sister.”

“It was so lovely to spend some quality time with both of my children. Normally it’s hard to do this, but knowing the staff were on hand and the cottages were all accessible, it meant I could take them on my own.

“The whole trip was just brilliant, there wasn’t any more we could have asked for. (…) It was just a lovely break for me as well as the kids. The kids talk about it all the time even now, they always say they want to go back.”