We spoke to Alfie, now 9, and his mum Caroline to understand a little more about his story and how we copes with the ongoing fatigue – a side effect that we know affects a lot of our community.
How fatigue affects Alfie
Although Alfie’s tumour was removed successfully, he still gets side effects, most notably fatigue.
“Since I’ve had the tumour, I get really tired, even though they took it all out. I’m having to take the week off school at the moment, because I’m so tired.
“That’s really difficult, because I like going to school, but if I have a really busy week then the one after is usually quite bad.
“I also get quite emotional. I’ll cry at things really easily – even something silly like if I drop my coat. When I feel like that, I just want to get away from all sorts of noise.”
How mum Caroline helps Alfie
“As he’s got older, Alfie has definitely got better at managing his fatigue,” admits Caroline. “That said, I still notice the signs that he’s struggling before he does.
“I also manage his activity levels, if I know he’s got something coming up he won’t want to miss. I’ll suggest that he needs to have an early night at home, rather than spending time at a club. Otherwise, he’ll be good for nothing the next day.”
“I do worry for Alfie as he gets older. If it’s the lifelong condition that it appears to be, I worry about how he’ll get through his GCSEs and other things in his life. He’ll get better at managing it, but it’s a concern.