Little Brainstrust

Patient Stories

Charlotte's Story

Charlotte Hobbs was diagnosed with a DNET brain tumour when she was just 12, following a succession of seizures. Her family wanted to do the absolute best for her, but every effort seemed thwarted by a catalogue of differing opinions, stressful tests and being kept in the dark about the correct way forward. It was a long battle to get Charlotte better, but the family - with their love and humour keeping them going - persevered. Charlotte was finally able to get the correct treatment for her tumour three years later.

The family were shocked by the diagnosis. Although only 12, Charlotte was devastated too, realising this was something worse than she had at first understood. Several specialists were involved in Charlotte's care in the early days and it was both confusing and frustrating for the whole family. They were given conflicting information and felt that they didn’t know enough to question what was being said. From being told that the operation to remove the tumour was 'too risky' to Charlotte having to undergo a series of psychiatric tests to 'see if she was ready for surgery' made what was a worrying situation even more difficult and stressful.

Never one to complain, and not liking to be the centre of attention, Charlotte was amazingly brave, and carried on life at school as best she could. She did of course find things hard though, especially when her friends were busy doing the things she couldn't. She says she struggled with that, ‘because they were off having a good time and I was stuck here thinking am I going to be okay or not?’ A terrifying question for anyone, let alone a young teenager. But her friends were always there to cheer her up and reassure her it wouldn't be all bad.

Following a little help from brainstrust, the family was able to secure a second opinion. Charlotte and her mum and dad drove the many hours to this appointment in Liverpool. Charlotte says she was excited on the drive up, but also very nervous, knowing that they were going to talk about the surgery in detail. It was worth it. They were given much more information and were spoken to openly. Charlotte had further tests here (no easy feat, with her phobia of needles), but they were really kind and reduced her fear of having scans. The relieved family left for home with a date in the diary for Charlotte to have surgery. 

Charlotte’s dad, Steve, says "We persevered, we asked questions and we were not prepared to give up, or just to 'wait and see'. Thankfully we were able to get the correct treatment for Charlotte. Without brainstrust giving us the correct route, this might never have happened and we are hugely grateful to the charity and to the staff at Alder Hey who were able to quickly assess, treat and care for our daughter.  If we had had more support and our voice had been allowed to be heard at the beginning, none of us would have endured the three years leading up to what was ultimately a successful outcome."

Charlotte had successful surgery in September 2011 and is now enjoying life as a gorgeous, popular teenager. She has just been accepted into sixth form, can’t wait for her prom and has such an exciting future ahead.