Three year-old Lottie is a bright, bubbly and independent little girl who loves nothing more than singing and socialising. And no matter what she might be going through, she always has a big smile on her face.
When Lottie was just a few weeks old, mum, Jamie-Leigh, had a feeling that things weren’t quite right, and that Lottie wasn’t developing as she should be. After numerous hospital visits and tests, the diagnosis came; Chromosome Deletion 13Q, and Freeman Sheldon Syndrome, two extremely rare conditions. As a consequence, Lottie suffers with epilepsy and reflux, and needs to be PEG-fed through a tube. She has recurrent chest and respiratory infections, a lowered immune system, bone abnormalities and heart problems. She spends a lot of time in and out of hospital, and loses weight very quickly.
When Jamie-Leigh and dad, Richard, received Lottie’s diagnosis, Jamie-Leigh explained, “We felt totally crushed and wondered what life would be like. We suddenly felt like we had the world on our shoulders and I had to give up my career so that I could give Lottie the care she needed. When we’re not going to and from hospital, it’s a constant challenge to get the therapies and equipment that Lottie needs, and it means that she can’t take part in activities that other children her age can.”
After meeting one of the Doctors from The Donna Louise at the hospital, it was suggested that they come along to the hospice.
“To begin with, I was very scared by the word hospice – I thought it was a sad place, but when we saw it, it was a totally different world. It’s a safe environment and the support network it’s given us is amazing. We could be having the worst day ever, and really be struggling, and then a phone call comes asking if we’d like to come for respite. Any time we need help or advice, I know I can call the hospice and they will help as much as they can. We’ve had so much support from Angela, the Social Worker; thanks to her, we’ve now had access to an Occupational Therapist at home.
As well as practical support from our care team, Jamie-Leigh explains how meeting other parents’ at the hospice has helped her;
“Being able to relax and have a cup of tea with adults and have a conversation with other parents who are going through the same thing and know how I’m feeling is so important. They can share advice on the best routes to go down and it’s a space where someone listens and I can vent.”
For Lottie, coming to The Donna Louise is a chance to laugh, play and get messy! Jamie-Leigh tells us, “When Lottie comes to The Donna Louise, she loves singing along with Phil the music man! She loves being creative, getting involved in play activities, especially messy play, and interacting with other children. It gives her time to have fun and be a child, and when she comes home, she’s relaxed and happy.”
And for Jamie-Leigh and dad, Richard, they can have some much-needed time together to rest and relax, safe in the knowledge that Lottie is having lots of fun back at the hospice, and getting all the care and attention she needs.
“It gives us chance to sleep! Sleep is so important to us as we very rarely get a full nights’ sleep, especially if Lottie has been in hospital. I don’t know how we’d cope as a family unit if The Donna Louise was no longer here - I’d feel broken. It’s like a second family that we can come to when we’re at our lowest. Everyone who supports the hospice is doing so much to help – you’re enabling us to be a family so that we can carry on to the next day.”