Starlight Stories

Meet Isaiah and his mum, Naomi

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Naomi tells us about Isaiah’s experience of illness, life in hospital and how Starlight helped give them a much deserved break.

“Isaiah is six years old and has a genetic disorder which is life limiting. He’s also visually impaired and non-verbal, physically he’s quite limited, however, he clearly understands a lot.”

“He’s got such a lovely character and personality. He enjoys interacting with people, he’s very social so likes people to be around him even if he’s just listening in – he’s very nosey! He just likes being involved.”

“I think we are quite lucky in our hospital, we have a sensory room, an indoor playroom and an outdoor play area. We also have play specialists who come around and help, even though I don’t like leaving him as he’s so young but it just means I can go and get a coffee or nip home to get something. He does arts and crafts with them, and he loves the sensory room so they often leave it unlocked for us.”

“Hospital life is very draining, we’ve been in there for up to three months at a time before, and Isaiah can’t always go into the playroom because he’ll be on oxygen or he’s too uncomfortable. It’s really tiring, you’re worried and repeating yourself constantly speaking with lots of different medical staff. You’re trying to keep someone entertained but it’s such a long day to entertain them and monitor their pain relief as well.”

“We were in hospital at the time of the Brickhouse break, so we joined a day later. He was quite uncomfortable and on a lot of pain relief but we’re so glad we managed to get away for a change of scenery. We did lots of arts and crafts and made a memory board which was lovely. He got to enjoy the day out at the zoo on the incredible accessible coach – I’ve never seen coach that can hold that many wheelchair users! He just really enjoyed being outside, from the sensory aspect I think it’s really good for him.”

“It was nice to be around other people and have a chat with a few other families either just general conversation or specifically about disability conditions. Everyone there knew what we were going through, there just this unspoken understanding, we didn’t need to explain ourselves – it just felt comfortable.”