EXCLUSIVE: Grieving mother from Surrey told her late daughter likely had the only known case of brain tumour type in the world
Sarah Levett is calling on the next government to prioritise funding into research and treatment, and wants to see more mental health support for loved ones of people with brain tumours.
Last updated 1st Jul 2024
A mum from Surrey has revealed that she was told her late daughter was likely to have been the only case in the world of a rare brain tumour type.
Sarah Levett, who is from Godalming, is now calling for the next government to prioritise more funding into tackling brain tumours, and also wants to see more investment into mental health support for parents and loved ones of people with brain tumours, alongside survivors.
Sarah's daughter Jody passed away in 2022 after a long battle. Sarah sat down for an exclusive interview with Greatest Hits Radio Surrey and East Hampshire.
Sarah works in a nursery and believed that her daughter would have gone down a similar career path.
"She was caring, she was kind, loved younger children... really cared about other people."
"She was incredibly brave the whole way through. She was constantly smiling, chatting to the children in the hospital when she was feeling well enough.
"Her happiest was when she was able to go to school."
Sarah first took her daughter to the doctors in 2018, and her daughter was operated on within a week.
Jody's first round of treatment was very intense - and her and Sarah spent a lot of time going to and from London. However, despite some scans coming back clear, during the pandemic, Jody relapsed and was unable to go back to her normal life before her first diagnosis.
Sarah added that there's a wide range of brain tumour symptoms, many of which people don't know about.
"The ultimate thing is more funding needs to go into brain tumours and it needs to go into an area where treatments can actually change."
"She did suffer with the odd headache but I wouldn't say there were enough headaches to ring alarm bells if that makes sense.
"It's vitally important to be aware of all sorts of symptoms. Obviously not to panic yourself but there are so many different symptoms that can lead to brain tumours.
"There were periods where she was acting younger than her age. She also had this facial tick...she couldn't walk in straight lines anymore...she used to be able to button up shirts and things, suddenly it was taking 45 minutes and lots of screaming and shouting and anger, because she suddenly couldn't do them."
Sarah gave us an insight into what it is like to grieve such a tragic loss.
"I think for me it hit after that funeral, because you've done everything I need to do, people started going home because I had people staying. That's where you go into the normal world and you realise just how lonely it is.
"It's very lonely and it's ongoing. One minute you think you're ok and literally something can just spark you like that. It could just be looking at a picture, it can be anything."
With the general election around the corner, Sarah is now calling on the next government to prioritise funding into fighting brain tumours, and mental health support for people impacted by them.
She also added that more could be done to implement long-term support for people grieving, saying "as time goes on, there's virtually nothing unless you seek it out yourself."
"The ultimate thing is more funding needs to go into brain tumours and it needs to go into an area where treatments can actually change and we can actually see a change in people's treatment and outcomes.
"Also, funding into mental health as well for the parents, for families afterwards, even for survivors because people think that if you survived, that's the end of it, but actually that can be the start of it because it can lead to so much else."
Brain tumours kill more people under the age of 40 than any other cancer, kill more men under 45 than prostate cancer, and more women under 35 than breast cancer.
Jody passed away at the age of 16.