Tresham College Performing Arts, Media and Music students have been helping to raise awareness of a rare, life-limiting disease this week using the skills they have developed on their course.
Five year old Isaac Tilley, from Kettering, has Batten Disease, a rare neurodegenerative disease and is receiving treatment at Great Ormond Street Hospital to help maintain his abilities for as long as possible. Affecting children and adults, there are currently up to 200 people in the UK with the condition.
Photo front row L-R : Aimee Tilley, soon to be shaved Guitarist Jack Gander and Tresham College Music Lecturer Kieran Harvey with the music students performing and Tresham College Head of Performing Arts, Media and Music Abby Smith (top)
In readiness for their social action week, Media students created an information video about the relatively unknown disease and worked with Isaac to film his own superhero episode. Head of Performing Arts, Media and Music Abby Smith presented their work to Isaac’s Mum Aimee today:
“The students have developed a social media friendly video to help raise awareness of Batten Disease, plus a fun version featuring Isaac as Spiderman with super powers. Our talented music students are also playing a gig to raise money, the performing arts students are putting on a showcase and all the students have organised various fundraising activities such as cake sales and a raffle.
“All the money raised will be shared between the Batten Disease Family Association charity and the Go Fund Me page created by Isaac’s Aunt called Isaac’s Journey Fighting Battens,” said Abby.
Isaac’s mum, Aimee Tilley, thanked the students for their support and will be attending the music gig with Isaac on Friday 11th March:
“Raising awareness is essential for early treatment. Batten Disease is so rare that even some Drs and nurses aren’t aware of it. The Batten Disease Family Association provide fantastic support, they put us in touch with other families and help fund research. Our Go Fund Me page was started by my sister and has enabled us to make adaptations around the house and give Isaac experiences to make him smile, this weekend we are going to Peppa Pig World,”
Music students were rocking at their gig on Friday 11th March 7pm at The Athletics Club in Kettering.
Guitarist Jack Gander has pledged to shave his head live on stage to raise more money on the night!
Donations can be made on Go Fund Me 'Isaac’s Journey Fighting Battens’ or to the Batten Disease Family Association via their website.Visit the go fund me page