In Our Hearts

The second of three children, Eva was just four years old when she was diagnosed with a diffuse intrinsic pontine glioma (DIPG), the most deadly of all childhood brain tumours for which there is no cure. Faced with the bleakest possible prognosis, her parents fought to find treatment which would offer her more time. Sadly Eva passed away within a year, her severely damaged body succumbing to pneumonia. 

“We have been plunged into this nightmare world where hardly any money goes into DIPG and yet this hideous form of brain tumour kills up to 40 children every year in the UK alone – that’s two classrooms full of infant school-aged kids. Like our daughter, these children are normal and happy until one day they fall over. Gradually their bodies shut down while maintaining complete cognitive awareness. They are fully aware until their arms and legs stop working. They become locked-in, a prisoner in their own shells – can you imagine anything worse for a fidgety and energetic five year old? Their young, healthy organs keep them going for much longer than an adult’s until, finally, they stop functioning. Our DIPG kids die a truly horrible death, slowly over months. And, as parents, we watch every minute of it with desperation and helplessness. The reality of DIPG is a living nightmare.”

We are grateful to Eva and her dad Paul, who worked with us in April 2020 to share her story here. Sadly, Eva passed away on 8^th January 2021. We remember Eva as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. She will be forever in our hearts.

Nine-year-old Eva Williams, from Wrexham, was diagnosed with a high-grade diffuse intrinsic pontine glioma (DIPG) in January 2020. The survival prognosis for this type of brain tumour – the deadliest type of childhood cancer – is eight to 12 months. She has undergone radiotherapy and her family has been told there is no further treatment available on the NHS. Desperate to help their daughter, Eva’s parents Paul and Carran are crowdfunding to raise the £250,000 needed for private treatment in the US.

First-time parents Kelly and Marc Evans were overjoyed at the safe arrive of their beautiful baby daughter Evie on 9^th March 2007. Their first sense that anything was wrong came when she was 18 months old. Eleven months later, after being examined in connection for repeated vomiting, a CT scan revealed a mass in Evie’s brain. She was diagnosed with an extremely rare Atypical Teratoid Rhabdoid Tumour (AT/RT), most prevalent in the under-three’s. She endured surgery and treatment but passed away, with her parents at her side, on 4^th November 2009. She was just two-and-a-half.

Young Finn from Barry in Wales was just 12 when he died from a diffuse intrinsic pontine glioma (DIPG) in July 2018, almost a year after his diagnosis. After experiencing double vision, a trip to the optician led to Finn being referred for an emergency scan at University Hospital of Wales, in Cardiff. The scan revealed devastating news of an inoperable mass on his brain stem which carried with it a stark prognosis of nine to 12 months. Despite radiotherapy to prolong his life, Finn died six days short of a year after his diagnosis and never got to meet his nephew.

To help her process Finn’s death, sister-in-law, Alana has written a book to share Finn’s memory with her young son, and other families who may have found themselves in the awful situation of having to explain a brain tumour to a child. 

Finnbar was a happy, active five-year-old boy, enjoying life to the full, when he started experiencing dizziness and later staggering when walking. After several trips to the GP, his family eventually got him referred. Tragically his diagnosis with a low-grade astrocytoma brain tumour, was changed a couple of months later to a more aggressive glioblastoma multiforme (GBM). His parents, Tristan and Claire, were given the devastating news that there was nothing that could be done to save their son. Just five months after being diagnosed, Finnbar passed away, just weeks before his sixth birthday.

“We are determined to see something good happen in Finnbar's name and memory. We hope that we can use our experience to make things better for other families that find themselves going through similar, heart-breaking situations, and ultimately to bring about an end to the evil of childhood brain tumours.”  

Fiona Bingham was just 33 when she passed away at her home in Chesterfield in March 2017. The guidance officer at Chesterfield College left behind her husband, Mark, parents Dodie and John Rutherford and her older brother, Alastair. Fiona, an International Hospitality graduate, was diagnosed in March 2015, following an eye test and subsequent scans. She underwent brain surgery, radiotherapy and chemotherapy to treat the tumour but, sadly, in February 2017, Fiona and her loved ones were given the devastating news that the treatment had stopped working and was being withdrawn.

We are grateful to Fiona who worked with us in January 2016 to share her story here. Sadly, she passed away on 11^th December 2017. We remember Fiona as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. She will be forever in our hearts.

Fitness fanatic Fiona discovered she had a brain tumour after collapsing at the gym. In the last six years she has undergone surgery and treatment as her tumour, classified as “low-grade” has continued to grow and cause paralysis. With the support of her husband, mother and friends, Fiona remains optimistic and will be supporting Wear A Hat Day 2016.

“I have known from the beginning that my tumour can’t be cured but I remain relatively optimistic. New treatments are coming out and I hope that there might be trials which I could be put forward for. My husband Andy is a very positive person. He has been a tower of strength and has kept me going. I see my mum every day and have great support from my friends.”