Ed Sheeran makes Batten Disease sufferer Holley Lavington's dreams come true in Adelaide

Holley Lavington, along with mum Tina and aunt Jodie, had her dreams come true on Wednesday as she met Ed Sheeran before his Adelaide Oval concert. Photo: Supplied.

Holley Lavington, along with mum Tina and aunt Jodie, had her dreams come true on Wednesday as she met Ed Sheeran before his Adelaide Oval concert. Photo: Supplied.

It was a once in a lifetime opportunity.

Before his sold out show at Adelaide Oval on Wednesday, musical powerhouse Ed Sheeran made one girl from South Australia’s mid-north dreams come true.

Five-year-old Holley Lavington, of Peterborough, suffers from Batten disease – a rare and terminal condition which effects about one per 12,500 people.

Holley had already purchased tickets to see her hero and would travel down to Adelaide on the afternoon of the concert 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, so I got the phone call and she said that Holley and I had a meet and greet with Ed Sheeran.

“We were super surprised.”

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 when the English singer-songwriter appeared.

“She looked up at him and smiled..a smile say its all,” Tina said, “that meant the world to me.”

Sheeran’s chart-topping single from 2014, Thinking Out Loud, is Holley’s favourite song having memorised all the lyrics.

“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.

“You go through all the emotions - the anger and the hurt – we still grieve everyday for Holley.

“As a family it has changed our world completely. 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 to better suit her needs, as well as supporting the travel cost to Adelaide for appointments and medical equipment.

Tina has had to stop working in order to care for Holley which has limited the income.

She said the money raised would help ensure that Holley can always receive the treatment and medication she needs.

Donations can be made via Tina’s GoFundMe page.

Northern Argus

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