A seven-year-old brain tumour patient, from Chorleywood, registered blind since the age of two, was the excited VIP guest at a family music festival.
The plucky youngster, who attended the Raver Tots Festival in Maldon Essex on Sunday August 1 with her family, also lives with the consequences of damage to her pituitary gland as a result of being diagnosed with an inoperable diffuse optic nerve glioma.
Betsy Griffin, a social media superstar-in-the-making with her Betsy’s Positive Videos on YouTube, is working with the charity Brain Tumour Research to raise awareness of its Stop the Devastation campaign.
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet historically just one per cent of the national spend on cancer research has been allocated to this devastating disease.
The pint-sized raver asked the audience if they had seen Brain Tumour Research’s Stop the Devastation campaign video, being shown at the festival, in which patients and people who have lost loved ones to brain tumours share their heart-breaking stories and expose the history of underfunding into the disease.
Betsy also appealed to festival-goers to join in by doing a hand stop selfie, posting it on social media with #NoMore and then donate £5 to 70085.
Along with sisters Ava, five and 18-month-old Faith, Betsy got to meet and have selfies taken with bands and dance music DJs headlining the festival, including DJ Archie, ‘the world’s youngest DJ’ at six years of age.
Mum Rochelle, 37 and a teacher at Northwood Secondary School, said: “Betsy was in her element at the festival. She loves dancing, but actually loves singing even more. She has a very eclectic taste in music and, because of her visual impairment, enjoys getting her Amazon Alexa to help her source new tracks to listen to.”
Betsy’s family started to notice that their two-and-a-half-year-old tot’s sight was deteriorating and that she was sleeping more in the daytime. After visits to the GP and learning that under-fives needed a referral to see an optician, they decided to speed up the process and paid privately for an appointment with an ophthalmologist.
Rochelle added: “Betsy underwent 18 months of gruelling chemotherapy which left her with hair loss, and on a feeding tube after losing an incredible amount of weight. And after all the suffering Betsy went through, the chemotherapy didn’t help, and the tumour was actually found to have grown not long after she completed the treatment.”
As well as having to cope with the challenges of being severely visually impaired, Betsy has to take daily hormone replacement medicines for growth, cortisol and thyroid function because the optic nerve glioma damaged her pituitary gland.
Since the age of four, Betsy has been on a research trial through Great Ormond Street Hospital (GOSH) and an American-based pharmaceutical company, taking MEK inhibitors which have shown to be successful in shrinking some tumours by up to 50 per cent.
Health coach, dad Stuart, 40, said: “The only way we are going to see more effective treatments and better survival for brain tumour patients is through greater investment in funding for research.”
Charlie Allsebrook, community development manager for Brain Tumour Research said: “We are so grateful to Betsy and her family for working with us to raise awareness and are so glad they were able to do this while having a fun day out.”
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