A seven-year-old brain tumour patient who has been registered blind since the age of two was the excited VIP guest at a family music festival at the weekend.
Betsy Griffin, a social media superstar-in-the-making, attended the Raver Tots Festival in Maldon Essex on Sunday, August 1 with her family.
Betsy, who is from Chorleywood, lives with the consequences of damage to her pituitary gland as a result of being diagnosed with an inoperable diffuse optic nerve glioma.
She was diagnosed after her family noticed her sight was deteriorating and that she was sleeping more in the daytime.
After visits to the GP, they decided to speed up the process and paid privately for an appointment with an ophthalmologist.
Mum Rochelle, 37, and a teacher at Northwood Secondary School, said: “I had already googled and started to suspect Betsy might have an optic nerve glioma, but it was still a huge shock to have it confirmed after the ophthalmologist ordered further tests and Betsy had an MRI scan.
“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.
But none of this stopped Betsy having a fun time at the festival over the weekend, having 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.
Rochelle 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 also has her own YouTube channel where she posts positive and inspiring videos and is currently working with the charity Brain Tumour Research to raise awareness of its Stop the Devastation campaign.
Rochelle added: “My daughter is a super confident little girl, as is evidenced by her Betsy’s Positive Videos on YouTube, and she really enjoyed the opportunity to raise awareness of the desperate need for greater funding for research into brain tumours.”
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.
“Stop the Devastation lays bare the powerful and painful truth about brain tumours – they are indiscriminate, they can affect anyone at any age, there is no cure and for many, sadly, there is little or no hope.
“Brain Tumour Research is determined to change this through creating awareness of the horrifying statistics, by funding research at its Centres of Excellence and through its continued lobbying of the Government and the larger cancer charities to increase the national spend.”
Betsy also appealed to festival-goers to join in by doing a hand stop selfie, posting it on social media with #NoMore.
To donate £5 text NOMORE to 70085
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here