A big smile beams on 11 year-old Thomas’s face when mum tells him it’s time for a sleepover at The Donna Louise. Bringing his best train set to put in his bedroom and favourite pictures to hang on the wall, the hospice has become a warm, comforting and fun-filled home from home for Thomas.
Thomas was born a seemingly healthy baby. But as weeks and months passed, parents, Christine and James, began to wonder if something might be wrong. Earache and tonsillitis is nothing unusual for many young children, but Thomas seemed to be constantly in and out of the doctors’ surgery suffering from infections, more than they felt was normal for a child his age.
After numerous tests in hospital, it was discovered that Thomas had an extremely rare genetic condition called X-Linked Agammaglobulinemia (XLA) which means that Thomas had no immune system and so can’t fight off viruses and infections. Since this discovery, Thomas has to have weekly infusions in his legs to protect him from infections – a treatment that he will have to have for the rest of his life as even a simple infection could quickly become very serious.
As Thomas grew up, the infections subsided but soon after starting at school, his condition deteriorated. Christine explains: “When the infections stopped, we thought he was growing up normally but when he was about 5 years old, his teachers at school noticed Thomas was really struggling to concentrate. He was always falling over, and had difficulty speaking without slurring his words.”
“His condition has become progressively worse as he’s got older. He’s now in a wheelchair and can’t do anything by himself. He has no core strength to hold himself up, his limbs are always very stiff and he can’t speak at all.”
Despite the genetic discovery, Thomas’s condition remains undiagnosed and doctors are still at a loss as to what the cause is so are unable to offer additional treatment. This has been devastating on the whole family: “It’s completely heart-breaking and so, so difficult. It’s just not the situation that we ever expected to be in. I feel so guilty that our other 2 children, Jack and Ella, don’t get as much attention as I wish we could give them. I feel like they miss out on so much and it makes things like family holidays almost impossible.”
Living in Stoke-on-Trent, Christine and James had heard of The Donna Louise, but had some preconceived ideas about what a hospice was, and that it definitely wasn’t for them: “My first thought about coming to a hospice was just ‘no.’ It just wasn’t something I wanted to think about – to me, coming to a hospice meant death. When one of the care team invited us to visit – I was so anxious taking that first step, but when I got there I realised it was totally different to what I expected.”
“The hospice has become somewhere for the whole family to come and we really couldn’t be without it now – it helps make things easier, so it’s really not somewhere to be scared of! The Donna Louise has become a home from home for Thomas, and for all of us.”
“It’s a chance for Thomas to get special one-to-one time just for him – when he’s at the hospice, I know that he’s well looked after, feels safe and has loads of fun. He loves the music room and the sparkly lights in the sensory room, and the garden is amazing – there’s a swing that’s especially made for wheelchairs that Thomas loves to go on. Ella and Jack love coming with me too so we can all stay and have tea together.”
Thomas’s sleepovers at The Donna Louise are also a chance for Christine and James to spend some time with Jack and Ella, safe in the knowledge that Thomas is happy and safe at the hospice. Christine explains: “It took me a while to leave him, but knowing he is so well looked after is such a weight off my mind. When Thomas is at the hospice, it’s a complete break and allows me to spend time with Ella and Jack.”
Coming to the sibling group has made a big difference for 9 year-old Jack too: “He doesn’t often get to do ‘normal’ things that other children do, and his friends at school just don’t understand the challenges that he’s dealing with, so it’s been good for him to meet others who are in similar situations. Jack loves coming to stay with Thomas sometimes, too – Christmas time was amazing for them both when they met the Stoke City players and Panto cast!”
Looking back on the support her family has had from The Donna Louise over the last 2 years, Christine tells us: “The Donna Louise has had a really positive impact on the whole family – I felt so isolated before coming here and I was in real need of counselling. I know that our family unit would be in a much worse position if it wasn’t for the amazing support network that the hospice has given us. It’s really brought us together as family which is normally almost impossible - it gives me and James time to be Thomas’s parents, not his carers, and to make special memories together as a family – for us, it’s really all about smiles and having fun.”