Children’s Hospice Week 2025: Gaby’s story
Evita’s daughter Gaby was born with half a heart – a rare condition called hypoplastic left heart syndrome. There is no cure, so her family takes every day as it comes. This Children’s Hospice Week, learn how Derian House Children’s Hospice supports Gaby and her family, from both her mum Evita and her Wellbeing Worker Caroline.
“We don’t know what the future holds for Gaby and so we take every day as it comes” – Evita
“If I had to describe Gaby in three words, it would be sassy, silly and lovable – she’s brighter than the sun! But despite her zest for life, our little girl is very poorly. She had her first open heart surgery at just six days old – it was the longest six hours of my life.
Gaby is two-and-a-half now, and she has since had three further operations. She may need a heart transplant when she’s older, too.
Derian House Children’s Hospice helps us to make the most of every moment we have as a family. We love coming to weekly playgroup at the hospice, where Gaby has made friends with Isla, a little girl who has the same condition. It’s great to be able to share my hopes and fears with her mum.
“Before we came to Derian House, I’d never left Gaby’s side, but at the hospice, I can relax because I know she is safe and having fun. I even had a massage from the hospice complementary therapist recently while Gaby played in the sensory room. It was the first thing I’ve done for myself since she was born and it felt wonderful.
“We’ve had a free week’s holiday at Derian’s lodge in the Lake District and had a brilliant time. We didn’t worry about paying the bills or hospital appointments, we had time to focus on being a family.
“Before having Gaby I didn’t realise how much families with poorly kids need help. Now I understand how special it feels knowing a stranger is helping to support your child.
“I often say to my husband that Gaby may have been born with only half a heart, but we are filling it with the most amount of love a heart can hold.
We may not have a long time with Gaby, but we will always have beautiful memories and pictures. I can’t thank Derian House enough for helping us to make the most of our time with her.”
Evita, Gaby's mum
“Gaby is just full of life and always enjoying herself” – Caroline
“I’m Caroline, and I’ve worked as a Wellbeing Worker at Derian House for almost eight years now. My job involves a little bit of everything – from running our in-house activities and day trips, to creating precious mementoes for families, such as hand and footprints, and castings. Every day is different and busy, but so fun.
“We also run extra groups during school half-term, such as Family Day Care, where our families come together to meet other families, and we facilitate activities. We also run School’s Out, which is for younger children to build social bonds and friendships outside of school.
“My favourite part of my job is working with the children and the smiles on their faces when they get to do something they don’t normally. Even if it’s something simple, like a certain activity, a swimming lesson, or being able to create something that they have imagined.
“Gaby first came to playgroup with her mum and dad. I think her family were a little bit nervous about coming in at first, as a lot of our families are, because we’re a hospice. They didn’t know what to expect here. But we welcomed them like we do any of our families, and they began visiting quite regularly.
“Gaby met other children, and in particular, became very good friends with another little girl, Isla. Their families got on really well too – and still do.
“Gaby’s family enjoy coming to Family Day Care and meeting other families there. It was really nice to see them come from being a little bit shy and reserved, to coming out of their shells and having a good time mixing with other families.
“Wellbeing activities like this are so important. For our families, it’s the friendships that they form, not just with the staff but with other families. Building those bonds and knowing that they are going through a similar thing.
I have seen Gaby blossom into the independent little lady that she is. It’s really nice to see her personality come out. She is just full of life and always enjoying herself. That’s what it’s all about. Seeing our children smiling, making memories, and having a fantastic time.
Caroline, Gaby's Wellbeing Worker
How we support children’s hospices like Derian House
Alongside raising vital funds for children’s hospices like Derian House, we also support children’s hospice professionals like Caroline. Day and night, they support families through the toughest times in their lives.
Families turn to them, in desperate need of support and help. But some problems are too big for them to solve alone. That’s when hospice nurses can turn to us.
Our Family Support Hub is run by a team of national experts who are there to help hospice nurses get the support their families need.
Financial grants for home adaptations, access to memory-making holidays, help with funeral costs- there are many reasons children’s hospice professionals reach out to us. Whatever problems hospice colleagues need help solving for their families, our Family Support Hub is here.