Before his sold out show at Adelaide Oval last Wednesday, musical powerhouse Ed Sheeran made one girl from Peterborough’s dreams come true.
Five-year-old Holley Lavington suffers from Batten disease, a rare and terminal condition which affects about one per 12,500 people.
Holley had already purchased tickets to the concert and would travel down to Adelaide with her mum Tina and aunt Jodie.
But it was one phone call Tina received the night before that took them completely by surprise.
“I got a phone call from Holley’s speech therapist Lisa Tilbrook,” Tina said.
“She obviously had been working behind the scenes trying to get Holley this opportunity, she said that Holley and I had a meet and greet with Ed Sheeran.”
Holley suffers from a loss of speech due to her condition which means she communicates non-verbally.
Tina said though that Holley’s face said it all.
“She looked up at him and smiled,” Tina said, “that meant the world to me.”
Holley’s favourite song is Thinking Out Loud.
“Every time she hears his voice she just jumps for joy.
“Holley really connects with music, that has always been a big thing...but there is something about Ed Sheeran that I just cannot describe.”
Tina said that Sheeran was “really sweet” towards her daughter.
Holley was first diagnosed with Batten disease in 2015 when she was just three and a half years old.
Batten disease effects the nervous system which causes mental impairment, seizures, loss of sight and motor skills, leaving those affected bed ridden and unable to walk.
Tina said that the family was “devastated” upon hearing the diagnosis.
“To know that one day our daughter won’t be here, it was a hard thing to take in,” she said, “trying to get your head around it took a long time.
“Our world is about Holley and her health, that is just the way we do it everyday.”
Holley’s family are currently raising money to help renovate their house in Peterborough, as well as supporting the travel cost to Adelaide for appointments and medical equipment.
Donations can be made via Tina’s GoFundMe page.