The grandmother of a seven-year-old diagnosed with an inoperable brain tumour is raising money for the charity Brain Tumour Research to help find a cure for the disease.
Sharon Exelby, 63, of Eastcote, North London, formerly HR manager at Harrow School, is taking on the 10,000 Steps a Day in February Challenge to raise vital funds.
Granddaughter Betsy Griffin, of Chorleywood, Herts, was diagnosed with a diffuse optic nerve glioma, aged two, which sadly took away her sight and damaged her pituitary gland.
Nanny Sharon, as she is known to Betsy, said: “Betsy was a very normal baby and advanced in many areas including her speaking and vocabulary. She had no classic brain tumour symptoms, but around the age of two, it became noticeable that her vision had deteriorated and she was sleeping more in the daytime.
“We tried to get her eyes tested but discovered opticians wouldn’t test a child under the age of five without a referral.
“I paid for a private ophthalmology test, only for us to be told Betsy’s optic nerve looked damaged and further urgent tests were required. It led to the saddest news of our lives – her diagnosis with a brain tumour.
“Betsy endured 18 months of gruelling chemotherapy, only for us to discover a few months later after the treatment had finished, that the tumour had grown again.
“She is now on a research trial through Great Ormond Street Hospital (GOSH) and an American-based pharmaceutical company. Betsy has to undergo two-hour MRI scans every three months, which incredibly she tolerates without anaesthetic or sedation.
“Betsy not only has to cope with the challenges of being severely visually impaired, she also has to take daily growth hormone replacement medicines for growth, thyroid function and cortisol medications. However, she doesn’t let this get in the way of her love for life and is an absolute inspiration to everyone she meets.
“She doesn’t see her lack of sight as a hindrance and it seems to have made her extremely resilient. Betsy really has an old head on young shoulders and has become a bit of a superstar on YouTube with her positive and motivational videos. She invariably does these in one take and has 2,850 subscribers.
“I am not someone who likes going to the gym, but if I do exercise it would be a walk. However, if it wasn’t for Betsy and raising funds for Brain Tumour Research, I wouldn’t normally choose to go out during the freezing cold weather we are having! But we desperately need to find more effective treatments and ultimately a cure for brain tumours.”
Betsy said: “I am really proud of Nanny Sharon and what she is doing to help find a cure and am looking forward to walking with her during half-term. She is spandangle, which is a word I made up to describe something fabulous!”
Brain tumours 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.
Charlie Allsebrook, community development manager at Brain Tumour Research, said: “Betsy is an absolute inspiration. I really think we should all #be more like Betsy!
“We are really grateful to Nanny Sharon for taking part in our 10,000 steps challenge and for helping to raise awareness.”
Brain Tumour Research funds sustainable research at dedicated centres 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 a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia and is also campaigning for greater repurposing of drugs.
Brain Tumour Research is the only national charity in the UK singularly focused on finding a cure for brain tumours through campaigning for an increase in the national investment into research to £35 million per year, while fundraising to create a sustainable network of brain tumour research centres in the UK.
The £35 million a year funding would bring parity with other cancers such as breast and leukaemia after historically just 1% of the national spend on cancer research has been allocated to brain tumours.
This increased commitment would enable the ground-breaking research needed to accelerate the translation from laboratory discoveries into clinical trials and fast-track new therapies for this devastating disease.
Brain Tumour Research 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) which published its report Brain Tumours A cost too much to bear? in 2018. Led by the charity, the report examines the economic and social impacts of a brain tumour diagnosis.
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 70 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
Source: Brain Tumour Research.
To donate to Brain Tumour Research – www.braintumourresearch.org/donation/donate-now (inspired by Sharon Exelby and Betsy.)
To view Betsy’s Positive Video on Brain Tumour Research go to www.youtube.com/watch?v=aBJO-JxuEok
