Emilia's Story

Raising on behalf of our friends Liz and Brett Roberts, this is their story...

This is our kind and beautiful daughter Emilia, aged 7, who in June last year was diagnosed with a rare and aggressive brain tumour, known as Diffuse Midline Glioma (DMG).

Only a few days before this diagnosis everything couldn’t have been more normal. With just two days of sickness and severe drowsiness we ended up in hospital. After several hours Emilia was sent home being told she had gastroenteritis. After deteriorating further, a second visit to the hospital the next evening, an emergency CT scan revealed a brain tumour.

We were blue lighted to Addenbrooke’s Hospital in Cambridge to undergo two emergency surgeries, one to relieve the pressure in her brain and the other to remove as much of the tumour as possible. We were devastated, in total shock, we couldn’t believe within only a few days our vibrant and lively Emilia went from playing with her 3-year-old brother George to being in such a life threatening situation .

After lots of steroids, further MRI scans, learning to walk again with physio sessions, Emilia recovered amazingly well from her operations and was sent home after 11 days.

A few weeks later Emilia received 6 weeks of gruelling radiotherapy and chemotherapy, meaning we were staying in London and back and forth as much as we could, to be with our son George. She had to have daily steroids which had horrid side effects on her body, weekly blood tests and antibiotics.

Emilia has been so brave and did all of this with a smile on her face, she has shown so much strength and resilience. We are so proud of her.

Unfortunately Emilia’s condition is rare and aggressive. The only treatment option currently available to her is a promising paid-for drug called ONC-201 from Germany which is still in trial phases worldwide*.

We want Emilia to benefit from these medicines which comes at significant cost of £250 per tablet.

This totals to a huge amount of money every month in such a challenging financial climate.

This is where we are unashamedly asking for your help…

Please help us raise funds, every pound and penny counts.

We want to be completely transparent in everything that we do which is why we are explaining this. The money that we raise will go towards Emilia's treatment, help to ease our financial burden at this impossible time, and help Emilia to have as many experiences and moments of joy with all of her family when time is so precious.

The whole family are still processing and reeling from Emilia’s diagnosis. We are a private family and are finding this public posting extremely hard….but we want to do all that we can to give her the best chance.

We hope we'll be able to arrange some sponsored events and fundraisers soon to help raise funds, but in the meantime hope you'll be able to make a donation to this page to help Emilia continue this treatment.

Brain tumours are under researched and supported in the UK. Brain tumours claim the lives of more children and adults under 40 than any other cancer, but data suggests only 2% of cancer research funding is spent in this area in the UK. Any funds unused will be donated to the Brain Tumour Charity.

Thank you for reading, and if you are able to donate, we thank you on behalf of Emilia and all of her family xx

*Update: In December, just after writing this, we were told that the German clinic providing Onc201 would no longer be able to do so and we would have to be part of the 'expanded access' trial run by the US company Chimerix which will come at an even greater cost. We don't yet know if we will have to travel to the US, to enable Emilia to be able to continue to have this promising treatment.