Sylvia and Milly

 “It’s got a huge impact because you know it’s coming, and you’ve got it to look forward to. It’s like a saviour in the distance.”

Milly is 10 years old and lives in the Highlands with her mum, Sylvia, brothers Tate and Drew, and sister Evie. Milly has West syndrome, which her mum describes as “A severe type of epilepsy in kids. She was fine until she was six months old.

Daily life and challenges

“When she got a bit older, they said she was on the autism spectrum, and as she’s grown up that’s become more noticeable. Covering her ears when she hears loud noises, she’s very sensory, she doesn’t sleep, and she screams if she hears loud noises. At seven years old she didn’t speak, and she’s still in nappies.

“It’s like having a baby, but she’s fully grown.”

One of the biggest challenges Milly faces is meltdowns and outbursts, which can be dangerous.

“It’s not so bad now, but she used to have terrible meltdowns, her room is padded now because she used to put her head through the wall, and throw herself at the wall, and make holes in them. We’ve got things in place now so that she is safe.”

How we helped

With their Take a Break grant, the family enjoyed going to theme parks and staying at Premier Inn hotels, which are Milly’s favourite.

“We used it with a Premier Inn, and Milly loves the Premier Inn. Milly doesn’t sleep, but when she’s at the Premier Inn, she sleeps. It’s just easier for everyone.

“We also take her to the theme park because her sensory brain loves getting thrown about on rides, and it really calms her down. We’ve done Alton Towers, Drayton Manor, and we managed to get away in October to just outside Birmingham and go to a safari with a theme park in it.”

“It gives me time to spend with the younger ones, while dad is looking after Milly next door.  The sleep is amazing. It’s just a lovely time. You come home and feel so much better. It gives the kids time to enjoy themselves too.”

“It’s got a huge impact because you know it’s coming, and you’ve got it to look forward to. It’s like a saviour in the distance.”