16-year-old Charlie lives in Chesterfield with his mum, Anna, brother, George, and sister, Evie. Charlie has Complex Hereditary Spastic Paraplegia, which means he has difficulty walking and has dementia. Charlie enjoys playing his guitar, going to college, and visiting Bluebell Wood. Mum, Anna, shares their story.

“From when he was two years old, I knew Charlie was different. He was developmentally challenged and didn’t want to hang out with other kids, and he got bullied a lot.

“In 2016 we went on a family holiday and he couldn’t walk properly in his flip flops. Over the next six months he developed a turned out foot, and by the end of the year he had started slurring his speech. My sister was a consultant at a hospital in Scotland and when she heard Charlie speak she knew something wasn’t right. One day she took him to the cinema and on the way home his legs just gave up and she had to carry him home. We were all really worried, especially Charlie – he kept asking me if he was going to die, but all I could say was ‘I don’t know’.

“Finally, in 2017 we found out that he has Hereditary Spastic Paraplegia. At first I thought ‘that’s not so bad’ but then I looked up the symptoms and I realised Charlie had the complex form. He can walk on flat ground but not on uneven ground, and he gets tired easily. Because the condition is neurological, Charlie also has dementia, which is heart breaking. Sometimes he’ll talk to you and he thinks he’s making complete sense, but he’s actually just mumbling. He can get up six or seven times a night and needs almost 24-hour support. I even have to have a baby monitor in his room so I can hear him if he wakes up or falls.

“Charlie’s diagnosis has affected our whole family. Because Charlie’s condition is hereditary, George is worried he’s going to get it too, and Evie never likes to leave my side. For me, Charlie’s condition has meant losing a lot of what made me, me. I’d just finished a three year degree in social work when he was diagnosed, but instead of getting a job I’ve become a full time carer for Charlie.

“Our community nurse suggested Bluebell Wood to us, but the thought of a hospice scared me. I was introduced to a counsellor there and at first I thought it wasn’t for me, but I now see a counsellor every week, which really helps. Charlie started coming to the hospice in June and he loves it. I was worried he would worry about how sick he was when he saw the other children, but he really enjoys going. He loves the bath, playing on the Xbox with the nurses, and practising his guitar at music therapy.

“Looking after Charlie can be mentally and physically exhausting but at Bluebell Wood I feel supported. Getting to know parents who understand is so important; they get that some days are just really bad. I hate using the word normal, but that’s how I feel at Bluebell Wood. I’ve been to some fantastic social events with other families which have been so much fun, and it’s great to hang out with them and just remember who I am.

“If I feel stressed I go for a walk in the Bluebell Wood garden and watch the brook. I take a deep breath and I know it’s going to be OK. We’ve faced a lot since Charlie’s diagnosis, but now I know that Bluebell Wood really is the best thing to come out of such a bad situation. They really do support the whole family. I can bring my mum or friends in and we all feel like part of the family, and Evie and George are really supported too. Without the hospice our lives would just be so different.”