Grieving parents have launched a Christmas appeal to help find a cure for brain tumours following the loss of their much-loved daughter.

The festive season will never be the same for the Barbers who live in Wymondham, Norfolk, after the death of Charlotte this year. Diagnosed as an eight-year-old, Charlotte defied the odds and the doctors’ prognoses to live to the age of 37. The eldest daughter of farmers Julie and David, Charlotte passed away in May having endured surgery, radiotherapy and chemotherapy.

And now, just seven months on, her mum and dad Julie and David, along with sisters Annabel, 33, and Lizzie, 26, who all live together at Cavick House Farm in Wymondham, Norfolk with Annabel and Lizzie’s partners and Granny Sheila, are working with the Brain Tumour Research charity in order to give hope to others.

They aim to raise £5,000 from across the region  

For 29 years the family cared for Charlotte after she developed complications following surgery, radiotherapy and chemotherapy. Over the three decades, she had more than 40 anaesthetics and, because she had regular seizures, her mum didn’t have a proper night’s sleep for 28 years.

Julie said: “Charlotte had a happy life at home on the farm, watching the animals and enjoying the garden. She gradually recovered from the chemo and radiotherapy, but sadly lost her reading, writing, numerical skills and eventually her speech. She had other complications including hypothyroid, epilepsy, right-sided weakness and scoliosis, as well as needing daily nebulisers, physio, medication and a feeding regimen.

“We miss Charlotte so much. Every time the washing machine bleeps I still think it’s the alarm on Charlotte’s feeding tube. It’s a struggle to go shopping because if I see anything pink and fluffy, or sparkly, I immediately think how much Charlotte would like one of those.

“Charlotte adored Christmas – the twinkly lights, going to see festive displays at local garden centres and spotting Christmas trees lit up in people’s houses – it was all so exciting. She loved watching her nurses make decorations or Nativity scenes, or going to Christmas concerts, especially at Wymondham Abbey.

“Most of our Christmases, however, were overshadowed by the worry that Charlotte would be poorly, as she often got chest infections in the winter. For years, I had my case and Charlotte’s packed and ready. I would wrap all the presents and leave notes in case I wasn’t there. It never actually happened, although we did spend a couple of New Year’s Eves and Charlotte’s birthdays (15 January) in hospital.

“Christmas was always planned and revolved around Charlotte. David and the family would get up early on Christmas morning to feed the pigs, check on the sheep and lambs and collect eggs – we supply a high-end supermarket – while I stayed in to get Charlotte up and dressed. We had nurses to help every other day, but it didn’t seem fair to ask them to come on Christmas Day.

“Before sitting down to Christmas dinner (which for most of her life Charlotte was unable to eat as she had to be tube-fed), we would all settle in front of the fire to exchange presents. Her face would light up with excitement at a shiny new bracelet, a lip-gloss or some beautiful pink nail varnish.

“We are dreading Christmas this year and are just taking a day at a time. It doesn’t feel right to be celebrating, but I suppose we will have to.

“I miss caring for Charlotte, her pink clothes and sweet little body. I ache to cuddle her again and say: ‘Father Christmas has been, darling.’

“Brain tumours are indiscriminate; they can affect anyone at any age. What’s more they kill more children and adults under the age of 40 than any other cancer, yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.

“That is why this Christmas the greatest gift we could receive, as a legacy to Charlotte, would be to raise £5,000 for desperately needed research to find a cure and bring hope to families who are given the news that a loved one has been diagnosed with a brain tumour.

Paula Rastrick, community fundraising manager at Brain Tumour Research, said: “For too long brain tumours have been a neglected cancer. Sadly, less than 20% of those diagnosed with a brain tumour survive beyond five years, compared with an average of 50% across all cancers.

“We really appreciate Julie and David’s support and urge people to donate now in memory of Charlotte. Together we will find a cure”

Brain Tumour Research funds sustainable research at Research Centres of Excellence in the UK; it also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is calling for an annual spend of £35m in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.

To make a donation to Charlotte’s appeal please go to www.braintumourresearch.org/our-christmas-wish/charlotte

For further information, please contact:
Liz Fussey at Brain Tumour Research on 07811 068357 or Liz@braintumourresearch.org

Notes to Editors

Brain Tumour Research is the only national charity in the UK dedicated to raising funds for continuous and sustainable scientific research into brain tumours, and we are a leading voice calling for greater support and action for research into what scientists are calling the last battleground against cancer.

We are building a network of experts in sustainable research at dedicated Centres of Excellence whilst influencing the Government and larger cancer charities to invest more nationally.

We welcome recent funding announcements for research into brain tumours from the UK Government and Cancer Research UK – £65 million pledged over the next five years. However, this potential funding of £13 million a year comes with a catch – money will only be granted to quality research proposals and, due to the historic lack of investment, there may not be enough of these applications that qualify for grants from this pot.

We want research funding parity with breast cancer and leukaemia. We are calling for a £30-35 million investment every year for research into brain tumours in order to fund the basic research groundwork needed to accelerate the translation from laboratory discoveries into clinical trials and fast-track new therapies for this devastating disease.

The Brain Tumour Research charity is a powerful campaigning organisation and represents the voice of the brain tumour community across the UK. We helped establish and provide the ongoing Secretariat for the All Party Parliamentary Group for Brain Tumours (APPGBT). We are supporting the crucial APPGBT 2018 Inquiry into the economic and social impacts of brain tumours and will publish their report in the autumn. We are also a key influencer in the development strategy for the Tessa Jowell Brain Cancer Mission. 

Key statistics on brain tumours:

• Brain tumours are indiscriminate; they can affect anyone at any age
• Brain tumours kill more children and adults under the age of 40 than any other cancer
• Historically, just 1% of the national spend on cancer research has been allocated to brain tumours
• In the UK, 16,000 people each year are diagnosed with a brain tumour
• Brain tumours kill more children than leukaemia
• Brain tumours kill more men under 45 than prostate cancer
• Brain tumours kill more women under 35 than breast cancer
• Less than 20% of those diagnosed with a brain tumour survive beyond five years compared with an average of 50% across all cancers

Please quote Brain Tumour Research as the source when using this information. Additional facts and statistics are available from our website. We can also provide case studies and research expertise for the media.