Daisy is willful, kind and very, very active! She also has a rare, complex medical condition, so since Daisy was little, Demelza has been providing support to her and her family, including care at home, art therapy for her sister, support during hospital stays, and family events.
Hear from Daisy’s mum, sister, nan and Demelza nurse on how this support helps the whole family make every day a little more extraordinary.
Fiona, Daisy’s mum
“When Daisy was diagnosed, she was just four months old. She has very rare, complex medical conditions - she’s ventilated via a tracheostomy 24/7, and has a feeding peg. She also has epilepsy and global development delay.
“Daisy's complex needs mean she needs one-to-one care, she needs a safe environment, and she needs someone who knows what they're doing.
“The first time we left Daisy was nerve wracking. I had full trust and faith in the nurse and the carer that we left her with, but that's our baby, that's our very complex, very changeable baby, who we're walking away from.
“But that was the turning point for us. Becoming comfortable leaving Daisy with Demelza nurses came from knowing that they actually do the same kind of checks you would expect in intensive care in hospital, but in your own home. Once you know that's taking place and you can see your child smiling when you're walking away, there's no turning back from there.
“Daisy loves coming to Demelza, because there is nothing that's off limits. She can paint, she can get covered, she can go in the garden safely, she can have as many slices of toast as she wants. She can run up and down the corridors and she can watch whatever she wants on TV, on repeat.
“Freya also loves coming to Demelza because she absolutely loves arts and crafts, and the arts and crafts section there is pretty epic. Freya was three years old when Daisy was diagnosed, and from the minute we left home to go to the hospital, Freya has been with us. Her role as a sibling carer - it’s changed Freya’s life as well. She knows Daisy’s needs, she knows how to keep Daisy happy. And she’s Daisy biggest advocate, after myself.”
Freya, Daisy’s sister
“The thing that’s really special about my little sister Daisy is she’s really kind. She is interesting and fun, and sometimes she’s a bit crazy!
“When Demelza is looking after my sister, it’s better for me because I get to spend some time with my mum. Sometimes I don’t get to spend that much time with my mum. And we also get to go to places we can’t usually go, like cinemas.
“When I go to Demelza with my little sister, we go to the park and we always love going on the swings together and exploring. I always feel excited and happy to be going there, because I know my little sister is going to be happy.”
Julie, Daisy’s nan
“The support that Daisy gets from Demelza is wonderful. The staff, what they offer for Daisy, and also what they offer for her sister. The amenities, the play area, the games, the nurses, the meals. I can't praise it enough and the respite that we're able to get through Demelza.
“We would find it really, really hard without Demelza’s nurses. They’re invaluable. They just make the day a bit easier. I couldn’t imagine not having them. We feel like they’re part of the family.”
Beth, Daisy’s nurse
“I love looking after Daisy. She’s got an amazing character. She's just so wilful, she knows what she wants! And she'll do whatever it takes to get what she wants. Which is amazing because we don't have to stick to structure and routine as such, we're not putting any demands on her – she leads. She tells us what she wants. And most of the time – within reason! – we can give her that different experience!
“As Daisy's got older, and our relationship has built with her family, they have utilised more of Demelza’s services. Over time, mum has got a bit more confident in letting other people look after her. Daisy's very complex, and to give care of your child over to anybody is really difficult. But especially so with a more complex child.
“But it was about getting to know our staff, getting to know us in the family home - I think that really helped to encourage her and help her realise that we do have the skills to look after her daughter.
“It massively helps their everyday life, because we are the only people that can give Daisy support without needing another family member to be with us. We're able to take her out independently so the family can spend more time together. That’s a unique opportunity where we can look after her and they can go out as a family, have some time together, or mum can just do something for herself.
“We just see it as doing our job, and we have a lovely time with Daisy, but I think the family really do appreciate what we do.”
Fiona, Daisy’s mum
“Demelza has helped us in ways I didn't even think they could help us, from taking us up to London for hospital appointments and coming back the next day to bring us home, to entertaining Freya on the most fantastic sibling events, to making sure that Daisy is well cared for. They have supported us every step of the way.
“For any parent who is sitting there, not wanting to get in touch with Demelza, take ‘hospice’ out of your mind and see it as freedom. See it as quality time and see it as the biggest support you're ever going to get on your journey.”
