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There’s also the sensory room that Ted spends quite a lot of time in when he has respite here and the garden, which has amazing facilities for children in wheelchairs – Ted loves going on the swing. It gives us an opportunity to spend time together in a safe environment – both Ted and Hallie always really enjoy themselves.
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Christopher’s is the perfect place for her – it’s the perfect place for both of them to spend quality time together.”Īmber continues, “We love coming to the family splash sessions in the hydrotherapy pool – it’s really sensory so Ted can completely relax. She’s really good with him and she takes care of him sometimes in her own little way. It was hard in the start for Hallie to understand why we come here or what Ted’s problems are, but as she’s getting older she’s starting to understand. Arthur says, “Being here gives Hallie the opportunity to have quality time with her brother without the distraction of other children as public places can be quite overwhelming for Ted and that makes it difficult for them to share special moments together. “Sometimes we just need a break and Ted can come here and he still enjoys himself – it’s like a home from home,” explains Arthur.Ĭhristopher’s, our hospice in Guildford, is also somewhere the whole family can enjoy time together, including Ted’s younger sister, 3-year-old Hallie. “We didn’t know how much we needed a lifeline until we were given that lifeline,” says Amber. The level of care that Ted needs resulted in him being referred to Shooting Star Children’s Hospices not long after he was diagnosed. He needs 24-hour-care from us and has medication from when he first wakes up in the morning to when he goes to bed.” Eventually Ted was diagnosed with a condition called Aicardi-Goutieres syndrome (AGS), which means that he has brain damage ultimately and it affects his everyday life – he has a lot of healthcare needs, for instance he’s fed via a tube in his stomach, and he’s in a wheelchair.”Īrthur continues, “Ted can’t sit up on his own, he can’t walk or talk, but he has his own sounds that we know mean if he’s unhappy or happy. “We took Ted to the doctors and he had numerous tests. “Having grown up with a big family and being surrounded by children, I knew early on that Ted didn’t seem to be developing how he should be,” explains Amber. Following the joy of taking their first child home, Arthur and Amber’s world was turned upside down when Ted was diagnosed with a life-limiting condition.