Evie’s mum, Jo, says she gets real peace of mind when her daughter stays at Shooting Star House because the hospice not only look after Evie medically, they also know her likes and dislikes, and do everything they can to make sure she’s enjoying every moment.
5-year-old Evie has a condition so rare and complicated it remains undiagnosed. Since she was just a few weeks old, Evie has had regular seizures and strokes because of restricted blood flow to her brain. These have left her weak on the right side of her body, unable to talk and registered blind.
Evie’s condition is degenerative, which means the brain damage she’s already suffered won’t get better, and her condition is likely to worsen if she has any more strokes. Jo, Evie’s mum, describes what Shooting Star Children’s Hospices’s personalised care and support means to them:
“With her seizures and strokes, Evie has such specific needs so it’s difficult to trust people to look after her properly. Because she’s non-verbal you also have to know her personality and her signs to really understand what she’s thinking and feeling. But Shooting Star Children’s Hospices provides such amazing care that it’s the only place we can leave her, get a proper break and not worry.
“When we first went to the hospice four years ago we filled out the comprehensive care plan and the staff really took the time to get to know Evie and learn all about her. But it wasn’t just the medical stuff and spotting when she’s not right. They know she likes being tickled, she has to have her favourite toy with her at all times, she loves cheese and pickle and that she’s at her happiest when she’s swimming.
“We’re always in touch with the nurses and carers, updating Evie’s care plan with her little quirks, and we walk away feeling reassured that they listen to what we say and just get it. They do everything to make her short break as fun as possible and have built such a great bond with her that we trust them implicitly.
“When Evie knows she’s going to the hospice she gets so excited – she squeals and her arms start to flap! And when we pick her up to go home, one of her favourite carers, Hannah, will give her a big hug and Evie won’t want to go home because she’s had so much fun. We feel like they genuinely care about our daughter.”
Hannah has been working as a care team member for Shooting Star Children’s Hospices for over five years and describes why building a rapport with Evie has meant she enjoys her stays at the hospice:
“It’s especially important to get to know a supported child when they’re non-verbal like Evie because she can find it really upsetting and frustrating if people don’t understand what she’s trying to communicate. I’ve developed a really good bond with Evie so I recognise her signs and can tell what she wants. And she’s such a character; we have a great rapport and it’s always so much fun caring for her when she stays.
“Evie loves to have her favourite toy (which changes daily!) with her at all times; she enjoys the ball pit and the hop scotch panel in the sensory room; and hates having her hair brushed. She also loves to play a game where she points to something and you have to say what it is, and every morning we start the day by playing on the piano.
“I’m often really tired at the end of a long shift, but our supported families do this around the clock, day and night. Caring for a child with complex needs is hard work and there’s no day off for parents without the short breaks we offer at Shooting Star Children’s Hospices. I know our support makes such a difference to the families we look after, and for them to know that nurses or carers like me will give their child extra special care when they’re with us is priceless.”
It’s not just Evie’s parents who value the charity’s personalised care – Evie’s 7-year-old sister, Ruby-May, explains what Shooting Star Children’s Hospices means to her too: “Sometimes I feel like I’m missing out when Evie goes to the hospice to stay – it’s so much fun there and I wish I could go with her! I know they look after my sister really well though and that makes me happy.”
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