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.
“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. “We took Ted to the doctors and he had numerous tests. 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.”
Arthur 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. 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.”
The level of care that Ted needs resulted in him being referred to Shooting Star Children’s Hospices not long after he was diagnosed. “We didn’t know how much we needed a lifeline until we were given that lifeline,” says Amber. “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.
Christopher’s, our hospice in Guildford, is also somewhere the whole family can enjoy time together, including Ted’s younger sister, 3-year-old Hallie. 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. 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. She’s really good with him and she takes care of him sometimes in her own little way. Christopher’s is the perfect place for her – it’s the perfect place for both of them to spend quality time together.”
Amber continues, “We love coming to the family splash sessions in the hydrotherapy pool – it’s really sensory so Ted can completely relax. It gives us an opportunity to spend time together in a safe environment – both Ted and Hallie always really enjoy themselves. 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’s so accessible we can just have care-free fun when we’re here. The TV room is also a big part of Ted’s time here as he loves watching TV – in the cinema space we can just sit back, relax and watch a film without any pressures.
“Aside from the respite we get, we’ve also had counselling and the symptom care team help manage a lot of Ted’s needs. They’re at the end of a phone if we ever need them. We’ve also made lifelong friends from being here. You do forget why you’re here sometimes because it’s such a lovely place and the nurses and carers are just so friendly and willing – they want to help you and they want your children to have the best memories.”
To say thank you to Shooting Star Children’s Hospices, Arthur and Amber have started fundraising and over the last few years have raised almost £11,000, with Arthur taking part in two London Marathons to date.
“We obviously know how much Shooting Star Children’s Hospices help us and have an impact on our lives,” explains Amber, “but it’s getting people to understand how much that means to us which is the difficult part because it’s obviously not a place that everyone will come to. It’s trying to get across to people that we would be lost without them and that’s why we want to raise money for them – if we didn’t have the hospice I don’t know what we would do.”
Arthur says, “As well as raising money, running helps me to have some time out – it’s cathartic. Ted will sometimes join me on training runs in a special chair; it’s a great way for us to spend quality time together. Ted is an inspiration to me and I’m so proud to be his dad.”
Sadly, Ted died in March 2020, just a year after Amber and Arthur first shared his story. Thank you to his family who have bravely taken part in our 2020 Christmas appeal.