Children with MLD lose their ability to walk, talk, sit up, move, see and hear and eventually suffer seizures and dementia before end of life. In most cases, children rarely make it past 5 years old.
Here, Charlotte’s mum Paula tells us when the family was first introduced to Charlton Farm:
“I remember the first time we came to Charlton Farm in 2017 around 6 months after diagnosis. If I’m honest it wasn’t something I was overly keen on. Lottie still seemed fairly well and capable but I had heard that the sibling team were fantastic and given the fast progressive nature of MLD, I wanted to secure any support for her older brother, Alfie, that he would need in the near future. Alfie was only 10 but he was going to have to watch the most important person in the world to him fade away and we needed to prepare him as much as possible.
We were invited to come and look around and to get a feel for the place and meet the carers. When we arrived, we were greeted by Penny, one of the carers. Everyone was so friendly and welcoming. I was surprised how quickly the children settled in and felt at home. I remember we all sat in the conservatory to have a chat and cup of tea. The sun streamed in and filled the room with warmth and light. Without any prompting or encouragement from us, Alfie and Lottie sat together in one of the chairs quietly and he read Stick Man to her. I still remember Alfie’s innocent, gentle voice (because he was reading to his sister) and Lottie’s little fingers turning the pages with him. It was so simple but one of the most natural, purest things I have ever seen and it makes me so happy to think about it now. It was the first of many happy memories we have had at Charlton Farm.
We now stay several times a year and the children love it. There are so many things for Lottie to do despite her being unable to walk or move easily. There is a sensory room, which Lottie loves and a hydrotherapy pool which allows us to take her swimming in a clean, safe and comfortable environment. We don’t have to worry about getting her safely into the pool or about her picking up any bugs that can lurk around public pools.
When she was able to sit up, one of Lottie’s favourite things was to be outside on the swings and slides. At Charlton Farm, this is something we have been able to continue through the use of their lovely garden. There is a wheelchair accessible swing, where she can swing in her chair next to Alfie and an adventure playground with nice, wide wheelchair friendly ramps, which we call ‘the slide’. We run down them with Lottie’s wheelchair and this always brings smiles and giggles. These facilities allow us to continue these simple experiences that Lottie loves.
Another of Lottie’s favourite things is music therapy where she is able to play the chimes with her hands - it’s great to see her making music independently; an ability we thought had disappeared at one point. Can you imagine thinking that your child has lost the ability to control their hands only to find that they could play an instrument without any help at all? Can you imagine the joy from the realisation that they can actually still move their hands independently? It’s like being granted extra quality time that you thought was lost. It’s impossible to describe how brilliant it felt to realise Lottie could still do it.
In addition to Charlton Farm’s support for Lottie, the sibling team at the hospice have more than lived up to their excellent reputation. The attention and support Alfie receives is invaluable and it’s comforting for him (and us) to know that there is a team of positive, friendly and understanding people there just for him. He always looks forward to visiting and I often feel like it’s a bit of a break for him from being the big responsible brother (although he would never agree that he needs a break from this). He always seems to leave even more happy and relaxed than when he arrives.
We have found that parents and carers use Charlton Farm for different purposes. Some use it as a respite break; to have date nights or spend one-on-one time with their other children, to have a good night’s sleep and have some self-care time. Some use it for a break of administering life-saving medicines to their child, a break from being a nurse for an evening so they may be able to have a glass of wine. Charlton Farm let carers have as little or as much input into their child’s care as they wish. For us, it has become like a holiday home. We stay with Charlotte and make the most of the fantastic facilities and experiences available to us as a whole family. With the stress and responsibilities of cooking a healthy hot meal and household chores taken away, the whole stay consists of quality time with our princess and making the most of the moment.”
Paula and Alfie will be taking part in Rainbow Run Bristol and raising money to enable the hospice to help even more families like theirs.
You can follow Charlotte's Facebook page for more insights into her life.