Let's Connect
Make a donation here
If only brain tumour research could be funded in the same way as leukaemia and other cancers

It is time rare childhood brain tumours got the funding that they desperately need

rhileys-smileRhiley’s story

In May 2014, the mum and dad of two-year-old Rhiley Bennett first became aware that something was not quite right with their daughter. After three weeks of various doctors and hospital visits, parents Kim and Richie were given the devastating news that Rhiley had a tumour on her spine.

Following surgery, they were told that the tumour had now reached her brain. Rhiley was soon diagnosed with a very rare, aggressive tumour of the brain and spinal cord called atypical teratoid/rhabdoid tumour (AT/RT). What followed was 11 months of MRI scans, chemotherapy, nurses’ trips and blood transfusions, until on the 23rd April 2015, two weeks after her third birthday, Rhiley sadly passed away. 

What is AT/RT?

Central nervous system AT/RT is a very rare, fast-growing tumour of the brain and spinal cord and usually occurs in children aged three years and younger, although it can occur in older children and adults.

About half of these tumours are located either within the cerebellum, which is located towards the back of the skull, or the brain stem which is the central part of the brain where it joins the spinal chord. The cerebellum is the part of the brain that controls movement, balance and posture, whereas the brain stem controls breathing, heart rate, and the nerves and muscles used in seeing, hearing, walking, talking, and eating. This means everyday activities such as walking, eating and breathing are seriously affected by a tumour of this nature. Furthermore, the signs and symptoms of AT/RT are not the same in every patient. This, alongside the fact that This type of tumour is not widely known about, makes it incredibly hard to diagnose.

AT/RT is a very difficult tumour to treat and, unfortunately, the outcomes remain poor. In general, older children with AT/RT tend to do better than young children. While cure rates for children over 3 are about 70%, those for children younger than 3 remain below 10%.

Hope for the future

After the tragic loss of their daughter, Kim and Richie felt compelled to act to raise awareness of this devastating form of cancer so that, in future, other lives might be saved. In June 2016, Kim launched an e-petition on UK Government Petitions website calling for urgent research into AT/RT tumours in the UK.

AT/RT is responsible for around 3% of paediatric brain tumours. The petition notes that due to its aggressive behaviour, AT/RT leaves younger children looking at their lives ending in a matter of weeks, or even days! The UK is currently lacking a standard protocol for therapies and treatments for this deadly form of cancer and a sheer lack of funding means that we are still far from a cure.

However, recent studies have reported that some patients with newly diagnosed AT/RT van have remission for 60-72 months after treatment with a specific combination of surgery, radiotherapy, and chemotherapy. Clinical trials are being carried out to assess the best combination of these therapies.

To ensure breakthroughs are made in research into rare childhood cancer research, such as AT/RT, and to help other families avoid losing their loves ones in the future, much more funding from the Government and larger cancer charities is urgently needed.

Please help us find hope for families in the future. Please sign and share Kim’s petition here.

Together we will find a cure.

2 Responses to It is time rare childhood brain tumours got the funding that they desperately need

  1. So sorry to hear about Rhiley! What a lovely little girl. It’s very sad indeed. Petition is signed. Why is there such a discrepancy between cure rates for under 3s and over 3s….or is that a work in progress? Good luck anyway with it all. xx

  2. So sorry for your loss. I too lost my son in January 2015. He had a Spinal AT/RT. My son Joel was 2 yrs 8 months when he died. It has been the hardest thing for me and my family. We decided to set up a fund in his name (Joel Prince Starlight Fund) specifically to raise money into research into ATRTS as we also discovered there was none. Thank you for doing something to help other children. No child should suffer and endure this terrible disease. My heartfelt wishes to you and your family.

Leave a Reply

Your email address will not be published. Required fields are marked *