Chloe Newton on the challenges and joys of being a sibling to Phoebe, 23, who has Pitts-Hopkins syndrome, a rare genetic neurological disorder 🖋️ KasiaLDelgado
I couldn’t do as much as my friends could do – they could just go out at a moment’s notice with their families but for us it all had to be carefully considered. I wasn’t able to behave as selfishly as some children might, because when you have someone with additional needs you’re thinking: “How long will we be out for? Will there be a proper changing table big enough, and if not, where will we change Phoebe?” Loads of times we’ve had to change her in the car boot.
As a teenager, I found it really hard when people stared at Phoebe. I don’t think she minded or noticed, but I remember going shopping in Milton Keynes shopping centre and people would be staring at us so hard that they’d be in our way, not noticing where they were going. I’d sometimes tell my mum I didn’t want to go shopping even though I enjoyed it, because I felt protective of her.
Radio presenter Jo Whiley is the first patron of Sibs, the charity for brothers and sisters of disabled children and adults. Whiley’s sister Frances has a rare chromosomal disorder called Cri du Chat syndrome Phoebe’s given me the ability not to sweat the small stuff, and to always remember what is actually important. There are loads of niggly, annoying things in life and I know that all that really matters is my family and that everyone’s all right. Even though Phoebe’s got this condition, she’s not poorly.
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